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1.
Cancer Med ; 9(2): 507-516, 2020 01.
Article in English | MEDLINE | ID: mdl-31769226

ABSTRACT

BACKGROUND: Smartphone technology represents an opportunity to deliver practical solutions for people affected by cancer at a scale that was previously unimaginable, such as information, appointment monitoring, and improved access to cancer support services. This study aimed to determine whether a smartphone application (app) reduced the unmet needs among people newly diagnosed with cancer. METHODS: A single blind, multisite randomized controlled trial to determine the impact of an app-based, 4-month intervention. Newly diagnosed cancer patients were approached at three health service treatment clinics. RESULTS: Eighty-two people were randomized (intervention; n = 43 and control; n = 39), average age was 59.5 years (SD: 12.9); 71% female; 67% married or in a de facto relationship. At baseline, there were no differences in participants' characteristics between the groups. No significant effects, in reducing unmet needs, were demonstrated at the end of intervention (4-month) or 12-month follow-up. Overall, 94% used the app in weeks 1-4, which decreased to 41% in weeks 13-16. Mean app use time per participant: Cancer Information, 6.9 (SD: 18.9) minutes; Appointment Schedule, 5.1 (SD: 9.6) minutes; Cancer Services 1.5 minutes (SD: 6.8); Hospital Navigation, 1.4 (SD: 2.8) minutes. CONCLUSIONS: Despite consumer involvement in the design of this smartphone technology, the app did not reduce unmet needs. This may have been due to the study being underpowered. To contribute to a meaningful understanding and improved implementation of smartphone technology to support people affected by cancer, practical considerations, such as recruitment issues and access to, and confidence with, apps, need to be considered. Australian New Zealand Clinical Trials Registration (ACTRN) Trial Registration: 12616001251415; WEF 7/9/2016.


Subject(s)
Mobile Applications/statistics & numerical data , Neoplasms/prevention & control , Smartphone/statistics & numerical data , Telemedicine/methods , Australia/epidemiology , Case-Control Studies , Female , Follow-Up Studies , Humans , Male , Middle Aged , Neoplasms/epidemiology , Prognosis , Single-Blind Method
2.
Support Care Cancer ; 27(9): 3219-3231, 2019 Sep.
Article in English | MEDLINE | ID: mdl-31098794

ABSTRACT

PURPOSE: The aims of this systematic review were to summarize the profile of caregivers accessing cancer helplines, to evaluate caregiver satisfaction with the helpline service, and to review the evidence base of intervention studies testing the efficacy of community-based cancer helplines in improving caregiver health and well-being. METHODS: Four electronic databases (Medline, CINAHL, PsychINFO, and EMBASE) were systematically searched to identify relevant literature, including all articles published in English until May 2018. Reference lists of accepted papers were reviewed for the inclusion of additional potentially relevant articles, gray literature was excluded. RESULTS: Forty-five publications met the inclusion criteria for this review. Forty-one papers reported on the proportion of caregivers accessing cancer helplines. Twenty-six studies described demographic and clinical characteristics of caregivers and eight reported on call characteristics. Reasons for contacting the service were stated in 21 studies and caregiver satisfaction with the helpline service was assessed in 12 articles. Fourteen studies investigated specific topics of interest (e.g., prevalence of sleep problems, distress screening, or clinical trial participation). Two randomized controlled trials examined the efficacy of cancer helplines in improving caregiver outcomes, with findings showing interventions to be effective in reducing distress and unmet needs, and in increasing positive adjustment. CONCLUSIONS: There is limited scientific evidence regarding the efficacy of cancer helplines to improve caregivers' health and well-being. More intervention studies are needed to examine the benefits of cancer helplines to this study population to ensure structured referral pathways can be established.


Subject(s)
Caregivers/psychology , Hotlines/methods , Neoplasms/psychology , Psychosocial Support Systems , Social Support , Humans
3.
JMIR Form Res ; 3(2): e10990, 2019 Apr 11.
Article in English | MEDLINE | ID: mdl-30973346

ABSTRACT

BACKGROUND: There are few support systems available to informal carers who provide care to cancer patients. Smartphone apps have the capacity to reach large audiences and can provide information and support at a time convenient to carers. OBJECTIVE: The aim of this study was to design a smartphone app prototype for carers of adults with cancer. METHODS: A multiple-method design was used to develop a smartphone app. Current and past carers of people with any type of cancer were recruited from a public hospital, a private hospital, and a carer organization, who participated in either a focus group or phone interview. Carers answered questions about items to include in an app to address supportive care needs identified. Using carers' feedback, a smartphone app was designed and tested. Beta testing was conducted using a convenience sample of participants who completed scenarios to inform the app's design, functionality, and usability. Scenarios were timed and marked as complete or incomplete. Participants completed a questionnaire about the usability of the app. Beta testing occurred in 2 stages-a paper-based version of the app and an app-based test using the participants' preferred device. Alpha testing was completed internally to ensure the functionality of the app. Data were collected between May 2016 and August 2017. RESULTS: A total of 33 carers participated in phone interviews and 12 in focus groups; their average age was 55 (SD 14) years, and 60% (27/45) were female. The majority of carers (76%, 25/33) had a positive attitude toward using smartphone apps. Carers noted that smartphone technology might improve their ability to seek information and support in managing their own health as well as the care needs of the person with cancer. Carers requested a variety of information and resources to be included in the app. Paper-based testing included the following: participants (N=10) were aged above 30 years (30%, 3/10), 30 to 49 years (30%, 3/10), and 50 years or above (40%, 4/10), and 60% (6/10) were male. Participants found the app user-friendly and pleasing in appearance. App-based testing included the following: participants (N=10) were aged above 30 years (20%, 2/10), 30 to 49 years (30%, 3/10), and 50 years or above (50%, 5/10), and 50% (5/10) were male. Participants reported the app to be user-friendly and easy to navigate. The majority (60%, 6/10) of participants were unable to create a shortcut icon to add the app to the home screen of their phone. CONCLUSIONS: Carers highlighted the needed information and support to assist them during the caring period; they also reported having a positive attitude toward smartphone apps. The Carer Guide App is currently undergoing a pilot study to further test usability among carers of people with 1 cancer type.

4.
JMIR Cancer ; 5(1): e11779, 2019 Jan 31.
Article in English | MEDLINE | ID: mdl-30702432

ABSTRACT

BACKGROUND: Carers experience unique needs while caring for someone with cancer. Interventions that address carers' needs and well-being have been developed and tested; however, the use of smartphone apps to support adult carers looking after another adult with cancer has not been assessed. OBJECTIVE: The objective of this study was to test the feasibility, usability, and acceptability of a smartphone app, called the Carer Guide App, for carers of people with colorectal cancer. METHODS: We recruited carers of people with colorectal cancer from outpatient day oncology units and provided them with access to the smartphone app for 30 days. Carers had access to video instructions and email contact details for technical support. Carers received 2 email messages per week that directed them to resources available within the app. Carers completed demographic questions at baseline and questions related to feasibility and usability at 30 days post app download. We used recruitment and attrition rates to determine feasibility and relevance of content to carers' needs as self-reported by carers. We assessed usability through the ease of navigation and design and use of technical support or instructional videos. Acceptability was measured through self-reported usage, usage statistics provided by Google Analytics, and comments for improvement. RESULTS: We recruited 31% (26/85) eligible carers into the trial. Of the 26 carers, the majority were female (19, 73%), on average 57 years of age, were caring for a spouse with cancer (19, 73%), and held a university degree (19, 73%). Regarding feasibility, carers perceived the content of the Carer Guide App as relevant to the information they were seeking. Regarding usability, carers perceived the navigation and design of the app as easy to use. Of the 26 carers, 4 (15%) viewed the downloading and navigation video and 7 (27%) used the contact email address for queries and comments. Acceptability: On average, carers used the smartphone app for 22 minutes (SD 21 minutes) over the 30-day trial. Of 26 participants, 19 completed a follow-up questionnaire. Of 19 carers, 7 (37%) logged on 3 to 4 times during the 30 days and 5 (26%) logged on more than 5 times. The majority (16/19, 84%) of carers stated that they would recommend the app be available for all carers. Comments for improvement included individualized requests for specific content. CONCLUSIONS: The Carer Guide App was feasible and usable among carers of people with colorectal cancer. Acceptability can be improved through the inclusion of a variety of information and resources. A randomized controlled trial is required to assess the impact of the Carer Guide App on carers' health and well-being.

5.
Psychooncology ; 28(3): 525-532, 2019 03.
Article in English | MEDLINE | ID: mdl-30600865

ABSTRACT

OBJECTIVE: Carers of people with cancer provide uncompensated care that is often physically, emotionally, and financially demanding, which results in neglect of their own health. This study's objective was to conduct an economic evaluation following a randomised control trial (RCT) involving a proactive telephone outcall intervention aimed at improving health outcomes among carers of cancer patients. METHODS: The trial was a single-blind, multicentre, RCT conducted across four Australian health services, comprising three outcalls from trained Cancer Council 131120 (Cancer Council telephone and information support services) nurses compared with three phone call reminders of the availability of 131120 services (control group). Outcalls consisted of telephone contacts to the caregivers initiated by the Cancer Council nurses. The primary trial outcome was reduced carer burden. Health care resource use was measured using a resource use questionnaire (RUQ), and costs were presented in 2013 $(AUS). Quality-adjusted-life-years (QALYs) were also used as health outcomes. An incremental cost-effectiveness ratio (ICER) was calculated, with bootstrapping used to quantify sampling variability. A $50 000 per QALY-gained willingness-to-pay threshold was used. Sensitivity analyses were conducted. RESULTS: Results showed that the total mean QALYs-gained were higher (0.02 QALYs, P = 0.01) in the control group, and total mean costs were lower in the control group ($477, P < 0.001) over the trial duration. The intervention group was dominated by the control group. Results were robust to sensitivity analyses. CONCLUSIONS: Results suggest policy makers should not adopt this intervention into routine health care in its current form. Further research into the efficacy and cost-effectiveness of telephone-based interventions for carers is required.


Subject(s)
Caregivers/economics , Health Promotion/economics , Quality-Adjusted Life Years , Remote Consultation/economics , Adaptation, Psychological , Adult , Australia , Caregivers/psychology , Cost-Benefit Analysis , Female , Humans , Male , Middle Aged , Neoplasms , Outcome Assessment, Health Care , Quality of Life/psychology , Single-Blind Method , Surveys and Questionnaires , Telephone
6.
Support Care Cancer ; 27(6): 2203-2209, 2019 Jun.
Article in English | MEDLINE | ID: mdl-30310987

ABSTRACT

PURPOSE: Informal carers may experience a range of unmet needs during the caring period and, at times, lack support to adequately manage care of the person with cancer and balance personal family and work commitments. The aim of this study was to understand the needs of informal carers of people with cancer and how digital technology may be used to address carers' needs. METHODS: Focus groups and semi-structured interviews were conducted with 45 carers. Carers discussed supports and services they used to address their needs, barriers to accessing support, and how digital technology could assist in meeting their needs. RESULTS: Carers used informal support such as friends and family and formal support including respite and community groups during the caring period. Barriers to accessing support included reluctance to seek external help, sensitivities associated with prioritising carers' needs over patients' needs, and the adequacy of information received. Technology was reported to have the potential to allow carers' privacy to seek support; however, carers' attitudes towards technology differed. CONCLUSIONS: Carers require support during the caring period to help balance their own needs with the needs of the person receiving cancer treatment. Digital technology may provide an opportunity to deliver support to carers; however, further research is needed to assess the appropriateness of these interventions to inform improved health outcomes for this vulnerable group.


Subject(s)
Caregivers/psychology , Neoplasms/rehabilitation , Adult , Aged , Aged, 80 and over , Female , Humans , Male , Middle Aged , Neoplasms/pathology , Social Support , Young Adult
7.
BMC Med Res Methodol ; 18(1): 146, 2018 11 21.
Article in English | MEDLINE | ID: mdl-30463520

ABSTRACT

BACKGROUND: Family members are increasingly involved in the care of cancer patients, however many are not prepared for this challenging role. Intervention-based studies are valuable to inform the most appropriate and effective support for caregivers. Barriers in the recruitment of patient/caregiver dyads exist but the reasons for non-participation are less well understood. This analysis determined the factors associated with participation in a randomized controlled trial involving patient/caregiver dyads, reasons for non-participation and factors associated with these reasons. METHODS: Patients with any type of cancer (other than non-melanoma skin cancer), and their caregiver were recruited at four Australian health services. Eligible patients were invited to participate together with their caregiver (N = 737). Non-participation data were collected from non-participants. Bivariate and binary logistic regression analyses were conducted to examine factors associated with participation. RESULTS: Of the 737 eligible dyads, 521 (71%) declined participation. Dyad characteristics associated with participation were caregiver gender, patient treatment modality and hospital type. The odds for participating were almost two times greater for female than male caregivers (p = 0.005); 13 times greater for patients receiving chemoradiotherapy compared to radiotherapy alone (p < 0.001); and three times greater for dyads attending a private versus public hospital (p < 0.001). Reasons for non-participation were lack of interest (33%), lack of time (29%), not requiring support (23%), too burdensome (15%); factors significantly associated with these reasons were treatment modality, patient age, cancer type, and hospital type. Patients diagnosed with prostate cancer and receiving chemotherapy alone were less likely to decline due to a lack of interest. Patients more likely to decline due to lack of time were those aged 40-59 years and receiving chemotherapy alone. Patients who were more likely to decline because they felt participation was too burdensome were those attending a private hospital for treatment. CONCLUSIONS: To optimize recruitment, it is recommended that special attention is given to different cancer types and treatment modalities, gender and age. Approaching dyads at varied time points when their need for support is high is recommended. This analysis provides important information for researchers undertaking randomized controlled trials involving people diagnosed with cancer and their caregivers.


Subject(s)
Caregivers/statistics & numerical data , Neoplasms/therapy , Patient Participation/statistics & numerical data , Patient Selection , Adult , Aged , Australia , Female , Humans , Logistic Models , Male , Middle Aged , Outcome Assessment, Health Care/methods , Outcome Assessment, Health Care/statistics & numerical data , Young Adult
8.
Support Care Cancer ; 26(11): 3789-3799, 2018 Nov.
Article in English | MEDLINE | ID: mdl-29766259

ABSTRACT

PURPOSE: To evaluate the utility of a telephone outcall program for cancer caregivers and to examine longitudinal changes in their distress levels and supportive care needs. METHODS: As part of the PROTECT trial, caregivers assigned to the intervention arm (N = 108) received three telephone outcalls from a Cancer Council 13 11 20 nurse at three time points (7-10 days post-randomization, 1 and 4 months later). During each call, caregivers were screened for distress using the Distress Thermometer (range: 0-10) then six supportive care issues were raised for discussion. Participants completed a utility survey 1 month post-intervention. RESULTS: The outcall program was highly acceptable and perceived as beneficial by caregivers. Overall, 95% reported it was worth their time to take part in the outcall program and 82% stated that the program was very relevant to them. Level of distress and impact of distress decreased over time (p = 0.0031, p < 0.0001, respectively). Average call duration decreased over time (p < 0.0001) and was longer for female than male caregivers (p = 0.0009). The frequency of caregivers discussing issues related to psychological distress (p = 0.0003), health literacy (p < 0.0001), financial (p = 0.0014), and practical concerns (p = 0.0121) decreased over time. Psychological distress was more often discussed by female than male caregivers (p = 0.0153), and family issues more often by younger (< 55 years) than older caregivers (p = 0.0071). CONCLUSIONS: Utility of this outcall program was high. Caregivers' level of distress and unmet needs decreased over time. Gender and age differences emerged, which warrants the need for tailored support. Further research is necessary to identify the best method of improving access to 13 11 20 services for caregivers.


Subject(s)
Burnout, Psychological/prevention & control , Caregivers/psychology , Needs Assessment , Neoplasms , Social Support , Stress, Psychological/therapy , Telephone , Adult , Aged , Burnout, Psychological/psychology , Caregivers/statistics & numerical data , Female , Follow-Up Studies , Hotlines/organization & administration , Hotlines/standards , Humans , Male , Middle Aged , Neoplasms/epidemiology , Neoplasms/nursing , Neoplasms/psychology , Stress, Psychological/epidemiology , Surveys and Questionnaires
9.
Psychooncology ; 27(6): 1650-1655, 2018 06.
Article in English | MEDLINE | ID: mdl-29624783

ABSTRACT

OBJECTIVE: Informal carers experience a variety of information and support needs when providing care to someone with cancer. It is unclear when carers seek information and what resources they access to support themselves throughout the cancer trajectory. METHODS: A sample of 45 carers and 15 oncology nurses were recruited to participate in either focus groups or phone interviews. RESULTS: Carers in the study were more likely to be women (60%), caring for a spouse or partner (64.4%), living with the patient (86.7%), and hold a university degree (46.7%). The majority of oncology nurses were females (66.6%). Findings showed that carers had limited access to adequate information as needs arose. Supports used to address information needs included information booklets, the Internet, and communication with healthcare professionals or with other carers. Barriers in communication between nurses and carers impacted on the adequacy of information received. Participants reported that technology, such as smartphone applications, might be appropriate for improving information and support needs. CONCLUSIONS: Caring for someone with cancer is multifaceted. Carers need access to timely information to help them effectively manage patients' needs. Future studies should assess the role of contemporary approaches, such as digital technology, as a solution to the delivery of information and support for carers of people with cancer.


Subject(s)
Attitude to Health , Caregivers/psychology , Consumer Health Information , Information Dissemination , Neoplasms/psychology , Social Support , Communication , Empathy , Female , Humans , Internet , Middle Aged
10.
BMC Cancer ; 18(1): 244, 2018 03 02.
Article in English | MEDLINE | ID: mdl-29499663

ABSTRACT

BACKGROUND: Carers looking after someone with cancer often experience negative impacts on their own health. M-health interventions have been designed to provide information and support to patients and their carers. However, the effectiveness of technology-based interventions for carers is less well understood. The objectives were to assess the feasibility, useability and acceptability of technology-based interventions among carers of people living with cancer. METHODS: A systematic search of the CINAHL, MEDLINE and PSYCINFO databases was performed using terms related to web-based interventions and smartphone applications, carers and cancer. Studies were included if a randomised controlled trial or pilot study was conducted, focused on adult carers looking after another adult with cancer and were published between January 2007-June 2017. Articles were excluded if they reported qualitative results only or were evaluating existing websites and applications. Feasibility was measured by attrition, recruitment rates and frequency of intervention use; useability was measured by the ease of intervention use and the role of features to minimise errors in use. Acceptability was measured by carers' perception of the appropriateness of the content and their ability to incorporate the intervention into their daily routines. RESULTS: Of the 729 articles, six articles met the inclusion criteria. Attrition ranged from 14% - 77%, recruitment rates from 20% - 66% and intervention useability varied across studies. Half of the studies implemented measures to improve useability. Overall, carers rated the content of the interventions as appropriate and reported improved knowledge and communication. Acceptability was further demonstrated as carers preferred the flexibility available with web-based interventions. CONCLUSIONS: Technology-based interventions are suitable for use among carers of people with cancer. Further research is required to fully assess the impact of technology as an information and support mechanism for carers.


Subject(s)
Caregivers , Mobile Applications , Neoplasms/therapy , Quality of Life , Telemedicine/methods , Adult , Humans , Pilot Projects
11.
BMC Cancer ; 18(1): 59, 2018 01 08.
Article in English | MEDLINE | ID: mdl-29310613

ABSTRACT

BACKGROUND: Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes. METHODS: Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed. RESULTS: The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91-3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42-1.44]; control group baseline, mean = 1.30 95%CI [0.80-1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52-1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers' confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients' depressive symptoms, unmet needs, self-empowerment, and other health literacy domains. CONCLUSIONS: While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations. TRIAL REGISTRATION: ACTRN12613000731796 ; prospectively registered on 02/07/2013.


Subject(s)
Adaptation, Psychological , Caregivers/psychology , Depression/prevention & control , Neoplasms/psychology , Adult , Aged , Depression/epidemiology , Depression/psychology , Female , Humans , Male , Middle Aged , Neoplasms/epidemiology , Neoplasms/pathology , Quality of Life/psychology , Single-Blind Method , Telephone
12.
BMJ Open ; 7(11): e017236, 2017 Nov 15.
Article in English | MEDLINE | ID: mdl-29146639

ABSTRACT

OBJECTIVES: A high proportion of care stemming from chronic disease or disability in low-income and middle-income countries is provided by informal caregivers. The goal of this study was to determine the level of burden experienced by these caregivers, explore associated factors and assess whether caregivers' and non-caregivers' health differed. DESIGN AND SETTING: This cross-sectional study was a secondary analysis of data on caregivers' burden, health and health risk factors in Ghana, India and the Russian Federation collected as part of the WHO's Study on global AGEing and adult health (SAGE) Wave 1. PARTICIPANTS: Caregivers in Ghana (n=143), India (n=490) and Russia (n=270) completed the measures. OUTCOME MEASURES: Factors associated (ie, demographics and caregiving profile variables) with burden were explored among caregivers. Then, quality of life (QOL), perceived stress, depression, self-rated health (SRH) and health risk factors were compared between caregivers and matched non-caregivers (1:2). RESULTS: The largest caregiving subgroups were spouses and adult children. Caregivers mostly cared for one person and provided financial, social/emotional and/or physical support, but received little support themselves. Burden level ranged from 17.37 to 20.03. Variables associated with burden were mostly country-specific; however, some commonality for wealth, type of care and caregiving duration was noted. Caregivers with a moderate or high level of burden reported lower QOL and higher perceived stress than those experiencing low burden. Caregivers reported lower QOL and SRH than non-caregivers. CONCLUSION: Given the lack of support received and consequences of the burden endured by caregivers, policy and programme initiatives are needed to ensure that caregivers in low- and middle-income countries can fulfil their role without compromising their own health.


Subject(s)
Aging/psychology , Caregivers/psychology , Depression/epidemiology , Quality of Life/psychology , Adaptation, Psychological , Aged , Chronic Disease/psychology , Cost of Illness , Cross-Sectional Studies , Developing Countries , Disabled Persons/psychology , Female , Ghana , Humans , India , Male , Mental Health , Middle Aged , Regression Analysis , Risk Factors , Russia , Social Support
13.
Eur J Oncol Nurs ; 28: 86-91, 2017 Jun.
Article in English | MEDLINE | ID: mdl-28478861

ABSTRACT

PURPOSE: Community-based cancer organizations provide telephone-based information and support services to assist people diagnosed with cancer and their family/friends. We investigated the demographic characteristics and psychosocial support needs of family/friends who contacted Australian Cancer Council 13 11 20 information and support helplines. METHODS: Data collected on 42,892 family/friends who contacted a 13 11 20 service across Australia from January 2010 to December 2012 were analyzed. Chi-square analysis was used to examine associations between caller groups and reasons for calling, logistic regression to examine age and gender interaction effects. RESULTS: The majority of calls received were from women (81%) of middle- (40%) and high-socio-economic backgrounds (41%), aged 40-59 years (46%); 52% phoned for information on cancer diagnosis (including early detection, risk factors), 22% on treatment/disease management, and 26% phoned seeking psychological/emotional support. Information on a diagnosis was significantly more often the reason older males called, compared to female callers of any age. Overall, 32% found out about the service through Cancer Council resources or events, 20% from the media, 18% from the internet; 11% from health professionals. CONCLUSIONS: Family/friends of persons diagnosed with cancer have specific information and support needs. This study identifies groups of family/friends to whom the promotion of this service could be targeted. Within Australia and internationally, clinicians and oncology nurses as well as allied health professionals can provide an important role in increasing access to cancer telephone support services to ensure the needs of the family and friends of people affected by cancer are being met.


Subject(s)
Caregivers/psychology , Counseling/statistics & numerical data , Family/psychology , Friends/psychology , Neoplasms/psychology , Social Support , Telephone/statistics & numerical data , Adult , Aged , Aged, 80 and over , Australia , Counseling/methods , Female , Humans , Male , Middle Aged , Needs Assessment , Socioeconomic Factors
14.
BMC Health Serv Res ; 14: 5, 2014 Jan 06.
Article in English | MEDLINE | ID: mdl-24393305

ABSTRACT

BACKGROUND: Carers provide extended and often unrecognized support to people with cancer. The aim of this study is to test the hypothesis that excessive carer burden is modifiable through a telephone outcall intervention that includes supportive care, information and referral to appropriate psycho-social services. Secondary aims include estimation of changes in psychological health and quality of life. The study will determine whether the intervention reduces unmet needs among patient dyads. A formal economic program will also be conducted. METHODS/DESIGN: This study is a single-blind, multi-centre, randomized controlled trial to determine the efficacy and cost-efficacy of a telephone outcall program among carers of newly diagnosed cancer patients. A total of 230 carer/patient dyads will be recruited into the study; following written consent, carers will be randomly allocated to either the outcall intervention program (n = 115) or to a minimal outcall / attention control service (n = 115). Carer assessments will occur at baseline, at one and six months post-intervention. The primary outcome is change in carer burden; the secondary outcomes are change in carer depression, quality of life, health literacy and unmet needs. The trial patients will be assessed at baseline and one month post-intervention to determine depression levels and unmet needs. The economic analysis will include perspectives of both the health care sector and broader society and comprise a cost-consequences analysis where all outcomes will be compared to costs. DISCUSSION: This study will contribute to our understanding on the potential impact of a telephone outcall program on carer burden and provide new evidence on an approach for improving the wellbeing of carers.


Subject(s)
Caregivers/psychology , Depression/prevention & control , Neoplasms/therapy , Caregivers/economics , Cost of Illness , Cost-Benefit Analysis , Humans , Program Evaluation , Quality of Life/psychology , Single-Blind Method , Social Support , Telephone
15.
Sleep ; 35(5): 699-707, 2012 May 01.
Article in English | MEDLINE | ID: mdl-22547896

ABSTRACT

STUDY OBJECTIVES: Upper airway muscles such as genioglossus (GG) and tensor palatini (TP) reduce activity at sleep onset. In GG reduced muscle activity is primarily due to inspiratory modulated motor units becoming silent, suggesting reduced respiratory pattern generator (RPG) output. However, unlike GG, TP shows minimal respiratory modulation and presumably has few inspiratory modulated motor units and minimal input from the RPG. Thus, we investigated the mechanism by which TP reduces activity at sleep onset. DESIGN: The activity of TP motor units were studied during relaxed wakefulness and over the transition from wakefulness to sleep. SETTING: Sleep laboratory. PARTICIPANTS: Nine young (21.4 ± 3.4 years) males were studied on a total of 11 nights. INTERVENTION: Sleep onset. MEASUREMENTS AND RESULTS: Two TP EMGs (thin, hooked wire electrodes), and sleep and respiratory measures were recorded. One hundred twenty-one sleep onsets were identified (13.4 ± 7.2/subject), resulting in 128 motor units (14.3 ± 13.0/subject); 29% of units were tonic, 43% inspiratory modulated (inspiratory phasic 18%, inspiratory tonic 25%), and 28% expiratory modulated (expiratory phasic 21%, expiratory tonic 7%). There was a reduction in both expiratory and inspiratory modulated units, but not tonic units, at sleep onset. Reduced TP activity was almost entirely due to de-recruitment. CONCLUSIONS: TP showed a similar distribution of motor units as other airway muscles. However, a greater proportion of expiratory modulated motor units were active in TP and these expiratory units, along with inspiratory units, tended to become silent over sleep onset. The data suggest that both expiratory and inspiratory drive components from the RPG are reduced at sleep onset in TP.


Subject(s)
Motor Neurons/physiology , Respiratory Muscles/physiology , Sleep Stages/physiology , Electroencephalography , Electromyography , Humans , Male , Polysomnography , Respiratory Muscles/innervation , Respiratory Physiological Phenomena , Young Adult
16.
Clin Neurophysiol ; 122(7): 1333-41, 2011 Jul.
Article in English | MEDLINE | ID: mdl-21247797

ABSTRACT

OBJECTIVE: This study investigated the presence and nature of EEG clusters within a clinically-referred sample of children with Attention-Deficit/Hyperactivity Disorder (AD/HD), and whether behavioural differences exist between clusters. METHOD: Participants were 155 boys with AD/HD and 109 age- and gender-matched controls. EEG was recorded during an eyes-closed resting condition and Fourier transformed to provide estimates for total power, and relative delta, theta, alpha, and beta. EEG data were grouped into 3 regions, and subjected to Cluster Analysis. Behavioural data for each cluster were compared against the remaining AD/HD subjects. RESULTS: Four EEG clusters were found. These were characterised by (a) elevated beta activity, (b) elevated theta with deficiencies of alpha and beta, (c) elevated slow wave with less fast wave activity, and (d) elevated alpha. An exploratory analysis of behavioural correlates with these EEG subtypes indicated the presence of interesting trends that need further investigation. CONCLUSIONS: This study found that the AD/HD EEG profiles reported in past studies are robust and not substantially affected by the inclusion of children with other comorbid conditions. The observed group differences in behavioural profiles indicated that different patterns of EEG activity have importance in determining behaviour. SIGNIFICANCE: This is the first study to link behavioural profiles of children with AD/HD to specific EEG abnormalities.


Subject(s)
Attention Deficit Disorder with Hyperactivity/psychology , Child Behavior/physiology , Electroencephalography , Adolescent , Autistic Disorder/psychology , Brain Mapping , Child , Cluster Analysis , Data Interpretation, Statistical , Diagnostic and Statistical Manual of Mental Disorders , Electroencephalography/statistics & numerical data , Humans , Male , Psychiatric Status Rating Scales , Wechsler Scales
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