A systematic review of psychosocial interventions for family carers of palliative care patients End-of-life care and the effects of bereavement on family caregivers of persons with dementia. A noninferiority trial of a problem-solving intervention for hospice caregivers: in person versus videophone. Existential behavioural therapy for informal caregivers of palliative patients: a randomised controlled trial. Evaluation of a short-term group intervention for informal carers of patients attending a home palliative care service. Caregiving as a risk factor for mortality: the Caregiver Health Effects Study. Reducing the psychological distress of family caregivers of home-based palliative care patients: short-term effects from a randomised controlled trial. Effects of a problem-solving intervention (COPE) on quality of life for patients with advanced cancer on clinical trials and their caregivers: simultaneous care educational intervention (SCEI): linking palliation and clinical trials. A psycho-educational intervention for family caregivers of patients receiving palliative care: a randomized controlled trial. Vital Conversations with Family in the Nursing Home: Preparation for End-Stage Dementia Care Partner-guided cancer pain management at the end of life: a preliminary study.
Background Being a family carer to a patient nearing the end of their life is a challenging and confronting experience . Studies show that caregiving can have negative consequences on the health of family carers including fatigue , sleep problems , depression , anxiety and burnout . One of the goals of palliative care is to provide psychosocial support to patients and families facing terminal illness . A systematic review of interventions for family carers of cancer and palliative care patients conducted at the start of this millennium demonstrated that there was a dearth of rigorous inquiry on this topic and consequently limited knowledge regarding the types of interventions likely to be effective in meeting the complex needs of family carers . We wanted to discern whether or not the evidence base to support family carers has improved . Furthermore , undertaking this review was acknowledged as one of the priorities for the International Palliative Care Family Carer Research Collaboration http://www.centreforpallcare.org . Methods A systematic review was undertaken in order to identify developments in family carer support that have occurred over the last decade . The focus of the review was on interventions that targeted improvements in the psychosocial support of family carers of palliative care patients . Studies were grade d to assess their quality . Results A total of fourteen studies met the inclusion criteria . The focus of interventions included  psycho-education , psychosocial support , carer coping , symptom management , sleep promotion and family meetings .  Five studies were r and omised controlled trials , three of which met the criteria for the highest quality evidence . There were two prospect i ve studies , five pre-test/post-test projects and two qualitative studies . Conclusions The systematic review identified a slight increase in the quality and quantity of psychosocial interventions conducted for family carers in the last decade . More rigorous intervention research is required in order to meet the supportive care needs of family carers of palliative care patients BACKGROUND Although  family caregiving  has been intensively studied in the past decade , little attention has been paid to the impact of end-of-life care on caregivers who are family members of persons with dementia or to the caregivers ' responses to the death of the patient . METHODS Using st and ardized assessment instruments and structured questions , we assessed the type and intensity of care provided by 217 family caregivers to persons with dementia during the year before the patient 's death and assessed the caregivers '  responses to the death . RESULTS Half the caregivers reported spending at least 46 hours per week assisting patients with activities of daily living and instrumental activities of daily living . More than half the caregivers reported that they felt they were " on duty " 24 hours a day , that the patient had frequent pain , and that they had had to end or reduce employment owing to the dem and s of caregiving . Caregivers exhibited high levels of depressive symptoms while providing care to the relative with dementia , but they showed remarkable resilience after the death . Within three months of the death , caregivers had clinical ly significant declines in the level of depressive symptoms , and within one year the levels of symptoms were substantially lower than levels reported while they were acting as caregivers . Seventy-two percent of caregivers reported that the death was a relief to them , and more than 90 percent reported belief that it was a relief to the patient . CONCLUSIONS End-of-life care for patients with dementia was extremely dem and ing of family caregivers . Intervention and support services were needed most before the patient 's death . When death was preceded by a protracted and stressful period of caregiving , caregivers reported considerable relief at the death itself PURPOSE OF THE STUDY Problem-solving therapy ( PST ) has been found effective when delivered to informal caregivers of patients with various conditions . In hospice , however , its translation to practice is impeded by the increased re sources needed for its delivery . The study purpose was to compare the effectiveness of a PST intervention delivered face-to-face with one delivered via videophone to hospice primary caregivers . DESIGN AND METHODS The study design was a r and omized noninferiority trial with two groups , Group 1 in which caregivers received PST face-to-face , and Group 2 in which caregivers received PST via videophone .  Family hospice caregivers were recruited from two urban hospice agencies and received the PST intervention ( in three visits for Group 1 or three video-calls in Group 2 ) in an approximate period of 20 days after hospice admission . St and ard caregiver demographic data were collected . Psychometric instruments administered to caregivers at baseline and at study completion included the CQLI-R ( Caregiver Quality of Life Index-Revised ) , the STAI ( State-Trait Anxiety Inventory ) , and the PSI ( Problem-Solving Inventory ) . RESULTS One hundred twenty-six caregivers were recruited in the study ; 77 were r and omly assigned to Group 1 and 49 to Group 2 .  PST delivered via video was not inferior to face-to-face delivery . The observed changes in scores were similar for each group . Caregiver quality of life improved and state anxiety decreased under both conditions . CONCLUSIONS The delivery of PST via videophone was not inferior to face-to-face . Audiovisual feedback captured by technology may be sufficient , providing a solution to the geographic barriers that often inhibit the delivery of these types of interventions to older adults in hospice BACKGROUND Existential behavioural therapy ( EBT ) was developed to support informal caregivers of palliative patients in the last stage of life and during bereavement as a manualised group psychotherapy comprising six sessions . We tested the effectiveness of EBT on mental stress and quality of life ( QOL ) . METHODS Informal caregivers were r and omly assigned ( 1:1 ) to EBT or a treatment-as-usual control group using computer-generated numbers in blocks of 10 . Primary outcomes were assessed with the Brief Symptom Inventory ( subscales somatisation , anxiety and depression ) , the Satisfaction with Life Scale ( SWLS ) , the WHOQOL-BREF and a numeric rating scale for QOL ( QOL-NRS , range 0 - 10 ) . Data were collected at baseline , pre-treatment , post-treatment and follow-ups after 3 and 12 months . Treatment effects were assessed with a multivariate analysis of covariance . RESULTS Out of 160 relatives , 81 were assigned to EBT and 79 to the control group . Participants were 54.5 ± 13.2 years old ; 69.9 % were female . The multivariate model was significant for the pre-/post-comparison ( p=0.005 ) and the pre-/12-month comparison ( p=0.05 ) but not for the pre-/3-month comparison . Medium to large effects on anxiety and QOL ( SWLS , WHOQOL-BREF , QOL-NRS ) were found at post-treatment ; medium effects on depression and QOL ( QOL-NRS ) emerged in the 12-month follow-up . No adverse effects of the intervention were observed . CONCLUSION Existential behavioural therapy appears to exert beneficial effects on distress and QOL of informal caregivers of palliative patients . Further longitudinal evidence is needed to confirm these findings Despite evidence of high psychological distress and unmet needs , evaluated interventions for informal caregivers in palliative care are few . This study involved an observational outcome evaluation of attendees , and a comparison group , in specialist home palliative care .  The measures included  carer psychological status and patient physical status at baseline , 8 weeks , and 20 weeks . Qualitative data were collected regarding content , satisfaction with , and impact of intervention . Process data described the uptake , re sources , and group activity . The intervention combined informal multiprofessional teaching with facilitated peer exchange and support , and was delivered over 6 sessions of 90 minutes per week . The uptake rate was 25 % ; carers were less likely to accept if they were in paid employment ( OR=0.26 , P=0.06 ) , and more likely to accept if they utilized avoidance coping ( OR=1.13 , P=0.04 ) or their patient had worse physical status ( OR=2.1 , P=0.03 ) . Attendees described significant support and knowledge gains from the multiprofessional input and peer group . Most relied on social comparison processes to appraise their situation . Potential detection of significant effects on global psychological scores ( i.e. anxiety , depression , and burden ) using multivariate analysis was disallowed due to attrition . This acceptable and accessible intervention provided information and support ; further outcome studies are needed for a range of interventions . Short-term interventions are unlikely to affect global psychological scores , and future evaluations should include additional time points of data collection to demonstrate support during attendance CONTEXT There is strong consensus that caring for an elderly individual with disability is burdensome and stressful to many family members and contributes to psychiatric morbidity . Research ers have also suggested that the combination of loss , prolonged distress , the physical dem and s of caregiving , and biological vulnerabilities of older caregivers may compromise their physiological functioning and increase their risk for physical health problems , leading to increased mortality . OBJECTIVE To examine the relationship between caregiving dem and s among older spousal caregivers and 4-year all-cause mortality , controlling for sociodemographic factors , prevalent clinical disease , and sub clinical disease at baseline . DESIGN Prospect i ve population -based cohort study , from 1993 through 1998 with an average of 4.5 years of follow-up . SETTING Four US communities . PARTICIPANTS A total of 392 caregivers and 427 noncaregivers aged 66 to 96 years who were living with their spouses . MAIN OUTCOME MEASURE Four-year mortality , based on level of caregiving : ( 1 ) spouse not disabled ; ( 2 ) spouse disabled and not helping ; ( 3 ) spouse disabled and helping with no strain reported ; or(4 ) spouse disabled and helping with mental or emotional strain  reported . RESULTS After 4 years of follow-up , 103 participants ( 12.6 % ) died . After adjusting for sociodemographic factors , prevalent disease , and sub clinical cardiovascular disease , participants who were providing care and experiencing caregiver strain had mortality risks that were 63 % higher than noncaregiving controls ( relative risk [ RR ] , 1.63 ; 95 % confidence interval [ CI ] , 1.00 - 2.65 ) . Participants who were providing care but not experiencing strain ( RR , 1.08 ; 95 % CI , 0.61 - 1.90 ) and those with a disabled spouse who were not providing care ( RR , 1.37 ; 95 % CI , 0.73 - 2.58 ) did not have elevated adjusted mortality rates relative to the noncaregiving controls . CONCLUSIONS Our study suggests that being a caregiver who is experiencing mental or emotional strain is an independent risk factor for mortality  among elderly spousal caregivers . Caregivers who report strain associated with caregiving are more likely to die than noncaregiving controls BACKGROUND Palliative care is expected to incorporate comprehensive support for family caregivers given that many caregivers suffer psychological morbidity . However , systematic ally implemented evidence -based psychological support initiatives are lacking . AIM The objective of this study was to prepare caregivers for the role of supporting a patient with advanced cancer receiving home-based palliative care by offering a one-to-one psycho-educational intervention . We hypothesised that primary family caregivers who participated in the intervention would report decreased psychological distress ( primary outcome ) , fewer unmet needs and increased levels of perceived preparedness , competence and positive emotions . METHODS A three-arm r and omised controlled trial was conducted comparing two versions of the intervention ( one face-to-face visit versus two visits ) plus st and ard care to a control group ( st and ard care ) across four sites in Australia . RESULTS A total of 298 participants were recruited ; 148 were in the Control condition , 57 in Intervention 1 ( one visit ) and 93 in Intervention 2 ( two visits ) . Relative to participants in the control group ; the psychological well-being of participants in the intervention condition was improved by a small amount but non-significantly . No significant reduction in unmet needs or improvements in positive aspects of caregiving amongst the intervention group were identified . However , the intervention demonstrated significant improvements in participants ' levels of preparedness and competence for Intervention 2 . CONCLUSION / IMPLICATION S This research adds to accumulating body of evidence demonstrating that relatively short psycho-educational interventions can enable family caregivers to feel more prepared and competent in the role of supporting a dying relative . Further investigation is required to determine the longer term outcomes of such interventions CONTEXT Patients on investigational clinical trials and their caregivers experience poor quality of life ( QOL )  , which declines as the disease progresses . OBJECTIVE To examine the effect of a st and ardized cognitive-behavioral problem-solving educational intervention on the QOL of patients enrolled on investigational clinical trials and their caregivers . DESIGN Prospect i ve , multi-institution , r and omized trial . QOL was measured repeatedly over 6 months . PARTICIPANTS Patients were simultaneously enrolled onto phase 1 , 2 , or 3 Institutional Review Board (IRB)-approved cancer clinical trials . INTERVENTION Intervention arm dyads participated in three conjoint educational sessions during the first month , learning the COPE problem solving model . Nonintervention arm dyads received usual care . OUTCOME MEASURES Global QOL was measured by the City of Hope Quality of Life Instruments for Patients or Caregivers ; problem solving skills were measured by the Social Problem Solving Inventory-Revised . RESULTS The results are reported using the CONSORT statement . The analytic data set included 476 dyads including 1596 patient data points and 1576 care giver data points .  Patient QOL showed no significant difference in the rate of change between the intervention and usual care arms ( p = 0.70 ) . Caregiver QOL scores in the intervention arm declined , but at less than half the rate in the control arm ( p = 0.02 ) . CONCLUSIONS The COPE intervention enabled the average caregiver to come much closer to stable QOL over the 6-month follow-up . Future studies should enroll subjects much earlier in the cancer illness trajectory , a common patient/caregiver theme . The maximum effect was seen in caregivers who completed the 6-month follow-up , suggesting that the impact may increase over time This study describes an evaluation of a psycho-educational intervention for family caregivers of patients dying of cancer at home . In a r and omized controlled trial , participants ( n = 106 ) received st and ard home-based palliative care services  ( n = 52 ) or these services plus the new intervention ( n = 54 ) . Data were collected at three time points : upon commencement of home-based palliative care ( Time 1 ) , five weeks later ( Time 2 ) , and then eight weeks following patient death ( Time 3 ) . No intervention effects were identified with respect to preparedness to care , self-efficacy , competence , and anxiety . However , participants who received the intervention reported a significantly more positive caregiver experience than those who received st and ard care at both Times 2 and 3 . The findings indicate that it is possible to increase caregiver rewards despite being immersed in challenging circumstances that often yield considerable negative psychosocial sequelae . Furthermore , it is feasible for health professionals to discuss emotive topics , such as impending death , with caregivers without adverse effects Family members of persons with advanced dementia may be asked to make complex treatment decisions without having adequate knowledge regarding the risks and benefits . This 6-month , prospect i ve , r and omized trial tested the effect of an intervention consisting of a face-to-face , structured conversation about end-of-life care options with family members of nursing home residents with advanced dementia . A comparison group received only social contact via telephone . Structured conversations between a palliative care team and intervention group family members included goals of care and how best to achieve those goals , and provision of psychosocial support . Psychosocial support was also provided via telephone at three 2-month intervals . Family members participated in three telephone interviews : baseline , 3 , and 6 months . Specific advance directives for persons with dementia were extracted from medical records . Results showed that intervention families had higher satisfaction with care than comparison families at the 6-month time point , and they were more likely to have decided on medical options listed in residents ' advance directives ( Do Not Resuscitate , Intubate , Hospitalize ) over time . Study findings reinforce the need for increased education and support for families around issues of end-of-life care decisions for advanced dementia This preliminary study tested the efficacy of a partner-guided cancer pain management protocol for patients who are at the end of life . Seventy-eight advanced cancer patients meeting criteria for hospice eligibility and their partners were r and omly assigned to a partner-guided pain management training intervention , or usual care control condition . The partner-guided pain management training protocol was a three-session intervention conducted in patients ' homes that integrated educational information about cancer pain with systematic training of patients and partners in cognitive and behavioral pain coping skills . Data analyses revealed that the partner-guided pain management protocol produced significant increases in partners ' ratings of their self-efficacy for helping the patient control pain and self-efficacy for controlling other symptoms . Partners receiving this training also showed a trend to report improvements in their levels of caregiver strain . Overall , the results of this preliminary study suggest that a partner-guided pain management protocol may have benefits in the context of cancer pain at the end of life . Given the significance of pain at the end of life , future research in this area appears warranted
The dem and for family caregivers steadily increases as the number of people receiving hospice and palliative care rises .
Family caregivers play a significant role in supporting their loved ones in end-of-life care .
However , there is limited evidence about the effectiveness of the interventions for supporting family caregivers .
This article synthesizes behavioral and educational interventions that support family caregivers in end-of-life care .