The family talk intervention in palliative care: a study protocol.
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ABSTRACT: In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention includes severely ill parents who have minor children (aged 6-19 yrs) and are receiving advanced homecare in Stockholm, Sweden between March 2017 and March 2018. The main goal of the FTI is to support family communication through psycho-education and narrative theory. The modified FTI consists of six meetings with family members, and is held by two interventionists. Each family sets up needs-based goals for the intervention. For evaluation purposes, data are collected by questionnaire before the intervention, within two months after baseline, and one year after baseline. Interviews will be conducted within two months after FTI is completed. Notes taken by one of the interventionists during the family meetings will also be used. Questionnaire data analysis will focus on patterns over time using descriptive statistics. For interview data and notes, content analysis will be used.This study will add knowledge about palliative care for parents who have minor children. It will contribute by testing use of FTI in palliative care, and point out directions for future evaluations of FTI in palliative care settings.ClinicalTrials.gov Identifier NCT03119545 , retrospectively registered in April 18, 2017.
<h4>Background</h4>In palliative care contexts, support programs for families with a severely ill parent and minor children are few, and even fewer have been evaluated scientifically. The aims of this study are to examine feasibility and potential effects of a modified version of the Family Talk Intervention (FTI) in palliative care.<h4>Methods</h4>This ongoing family-centered intervention has a quasi-experimental design comparing one intervention and one comparison group. The intervention inclu ...[more]
Project description:Introduction:There is evidence that families with a child diagnosed with cancer need psychosocial support throughout the illness trajectory. Unfortunately, there is little research into psychosocial interventions for such families, especially interventions where the entire family is involved. The aim of this pilot study is therefore to evaluate a psychosocial intervention, the family talk intervention (FTI), in paediatric oncology in terms of study feasibility and potential effects. Methods and analysis:This pretest/post-test intervention pilot study is based on families with a child diagnosed with cancer. All families that include at least one child aged 6-19 years (ill child and/or sibling) at one of the six paediatric oncology centres in Sweden between September 2018 and September 2019 will be asked about participation. The intervention consists of six meetings with the family (part of the family or the entire family), led by two interventionists. The core elements in the intervention are to support the families in talking about the illness and related subjects, support the parents in understanding the needs of their children and how to support them and support the families in identifying their strengths and how to use them best. Mixed methods are used to evaluate the intervention (web-based questionnaires, interviews, field notes and observations). Self-reported data from all family members are collected at baseline, directly after the intervention and 6?months later. Study outcomes are family communication, knowledge about the illness, resilience, quality of life and grief. Ethics and dissemination:The study has been approved by the Regional Ethical Review Board in Stockholm (Dnr 2018/250-31/2 and 2018/1852-32). Data are processed in coded form, accessible only to the research team and stored at Ersta Sköndal Bräcke University College in a secure server. Trial registration:ClinicalTrials.gov Identifier NCT03650530, registered in August 2018.
Project description:BACKGROUND:Children show long-term psychological distress if family communication and illness-related information are poor during and after a parent's illness and death. Few psychosocial interventions for families with minor children living with a parent who has a life-threatening illness have been evaluated rigorously. Even fewer interventions have been family-centered. One exception is the Family Talk Intervention (FTI), which has shown promising results regarding increased illness-related knowledge and improved family communication. However, FTI has not yet been evaluated in palliative care. This study therefore aimed to explore the potential effects of FTI from the perspectives of minor children whose parent is cared for in specialized palliative home care. METHODS:This pilot intervention study involves questionnaire and interview data collected from children after participation in FTI. Families were recruited from two specialized palliative home care units. To be included, families must include one parent with life-threatening illness, at least one child aged 6-19 years, and understand and speak Swedish. Twenty families with a total of 34 children participated in FTI; 23 children answered the questionnaire, and 22 were interviewed after participation. RESULTS:The children reported that FTI increased their knowledge about their parents' illness. They said the interventionist helped them to handle school-related problems, establish professional counselling, and find strength to maintain everyday life. Children aged 8-12 reported that talking with their parents became easier after FTI, whereas communication was unchanged for teenagers and between siblings. Children also reported having been helped to prepare for the future, and that they benefitted from advice about how to maintain everyday life and minimize conflicts within the family. CONCLUSIONS:Children who participated in FTI reported that it was helpful in many ways, providing illness-related information and improving family communication when a parent has a life-threatening illness. Other potential positive effects reported by the children were that FTI facilitated their preparation for the future, decreased family conflicts, and started to build up resilience. TRIAL REGISTRATION:ClinicalTrials.gov, Identifier NCT03119545, retrospectively registered 18 April 2017.
Project description:The lack of a holistic approach to palliative care can lead to a fractured sense of dignity at the end of life, resulting in depression, hopelessness, feelings of being a burden to others, and the loss of the will to live among terminally ill patients. Building on the clinical foundation of Dignity Therapy, together with the empirical understanding of dignity-related concerns of Asian families facing terminal illness, a novel Family Dignity Intervention (FDI) has been developed for Asian palliative care. FDI comprises a recorded interview with a patient and their primary family caregiver, which is transcribed, edited into a legacy document, and returned to the dyads for sharing with the rest of the patient's family. The aims of this study are to assess the feasibility, acceptability and potential effectiveness of FDI in reducing psychosocial, emotional, spiritual, and psychophysiological distress in community-dwelling and in-patient, Asian, older terminally ill patients and their families living in Singapore.An open-label randomized controlled trial. One hundred and twenty-six patient-family dyads are randomly allocated to one of two groups: (1) an intervention group (FDI offered in addition to standard psychological care) and (2) a control group (standard psychological care). Both quantitative and qualitative outcomes are assessed in face-to-face interviews at baseline, 3 days and 2 weeks after intervention, as well as during an exit interview with family caregivers at 2 months post bereavement. Primary outcome measures include sense of dignity for patients and psychological distress for caregivers. Secondary outcomes include meaning in life, quality of life, spirituality, hopefulness, perceived support, and psychophysiological wellbeing, as well as bereavement outcomes for caregivers. Qualitative data are analyzed using the Framework method.To date, there is no available palliative care intervention for dignity enhancement in Asia. This first-of-its-kind study develops and tests an evidence-based, family driven, psycho-socio-spiritual intervention for enhancing dignity and wellbeing among Asian patients and families facing mortality. It addresses a critical gap in the provision of holistic palliative care. The expected outcomes will contribute to advancements in both theories and practices of palliative care for Singapore and its neighboring regions while serving to inform similar developments in other Asian communities.ClinicalTrials.gov, ID: NCT03200730 . Registered on 26 June 2017.
Project description:IntroductionThere is limited evidence regarding the effectiveness of timely integration of short-term specialised palliative care services for older people in primary care. Using a Theory of Change approach, we developed such an intervention, the Frailty+ intervention. We present the protocol of a pilot randomised controlled trial (RCT) with a process evaluation that aims to assess the feasibility and preliminary effectiveness of the Frailty+ intervention.Methods and analysisWe will conduct a pilot RCT in Flanders, Belgium. Frail older people who are discharged to home from hospital will be identified and recruited. Seventy-six will be randomly assigned either to the control group (standard care) or the intervention group (Frailty+ intervention alongside standard care). Data will be collected from patients and family carers. At the core of the Frailty+ intervention is the provision of timely short-term specialised palliative care facilitated by a nurse from the specialised palliative home care service over a period of 8 weeks. We will assess feasibility in terms of recruitment, randomisation, acceptability of the intervention, retention in the programme and data completion. The primary outcome for assessing preliminary effectiveness is a mean score across five key symptoms that are amenable to change (ie, breathlessness, pain, anxiety, constipation, fatigue), measured at baseline and 8 weeks post-baseline. The process evaluation will be conducted in the intervention group only, with measurements at 8-11 weeks post-baseline to evaluate implementation, mechanisms of change and contextual factors.Ethics and disseminationThe study has been approved by the ethics committee of University Hospital Ghent. Results will be used to inform the design of a full-scale RCT and will be published in a peer-reviewed, open access journal.Trial registration numberISRCTN39282347; Pre-results.
Project description:BackgroundSeveral publications have addressed the need for a systematic integration of oncological care focused on the tumor and palliative care (PC) focused on the patient with cancer. The exponential increase in anticancer treatments and the high number of patients living longer with advanced disease have accentuated this. Internationally, there is now a persuasive argument that introducing PC early during anticancer treatment in patients with advanced disease has beneficial effects on symptoms, psychological distress, and survival.MethodsThis is a national cluster-randomized trial (C-RCT) in 12 Norwegian hospitals. The trial investigates effects of early, systematic integration of oncology and specialized PC in patients with advanced cancer in six intervention hospitals compared with conventional care in six. Hospitals are stratified on the size of local catchment areas before randomization. In the intervention hospitals, a three-part complex intervention will be implemented. The backbone of the intervention is the development and implementation of patient-centered care pathways that contain early, compulsory referral to PC and regular and systematic registrations of symptoms. An educational program must be completed before patient inclusion. A total of 680 patients with advanced cancer and one caregiver per patient are included when patients come for start of last line of chemotherapy, defined according to national treatment guidelines. Data registration, clinical variables, and patient- and caregiver-reported outcomes take place every 2 months for 1 year or until death. The primary outcome is use of chemotherapy in the last 3 months of life by comparing the proportion of patients who receive this in the intervention and control groups. Primary outcome is use of chemotherapy in the last 3 months before death, i.e. number of patients. Secondary outcomes are initiation, discontinuation and number of cycles, last 3 months of life, administration of other medical interventions in the last month of life, symptom burden, quality of life (QoL), satisfaction with information and follow-up, and caregiver health, QoL, and satisfaction with care.DiscussionResults from this C-RCT will be used to raise the awareness about the positive outcomes of early provision of specialized palliative care using pathways for patients with advanced cancer receiving medical anticancer treatment. The long-term clinical objective is to integrate these patient-centered pathways in Norwegian cancer care. The specific focus on the patient and family and the organization of a predictable care trajectory is consistent with current Norwegian strategies for cancer care.Trial registrationClinicalTrials.gov, NCT03088202. Registered on 23 March 2017.
Project description:To determine if laypersons' knowledge about palliative care can improve with a brief education intervention.152 adults were recruited to participate in a web-based randomized intervention trial that followed a 2 (content)×2 (format) between-subjects design. Groups received either a video intervention, an information page intervention, a video control, or an information page control. An ANCOVA with contrast coding of two factors was utilized to assess if knowledge, as measured by the Palliative Care Knowledge Scale (PaCKS), increased post intervention.There was a significant difference between intervention group means and control group means on PaCKS scores from T1 to T2 F(1, 139)=11.10, p=0.00, ηp2=0.074. There was no significant difference in PaCKS change scores between the video intervention and information page intervention.This study demonstrates that an information page and a brief video can improve knowledge of palliative care in laypersons.Self-administered educational interventions could be made available in diverse settings in order to reach patients and their families who may benefit from but are unaware of palliative care. Interventions more intensive than the one tested in this study might result in even more significant improvements in knowledge.
Project description:IntroductionEmotional disclosure (ED) is a term used to describe the therapeutic expression of emotion. ED underlies a variety of therapies aimed at improving well-being for various populations, including people with palliative-stage disease and their family carers. Systematic reviews of ED-based psychotherapy have largely focused on expressive writing as a way of generating ED. However, heterogeneity in intervention format and outcome measures has made it difficult to analyse efficacy. There is also debate about the mechanisms proposed to explain the potential effects of ED.We present a scoping review protocol to develop a taxonomy of ED-based interventions to identify and categorise the spectrum of interventions that could be classified under the umbrella term of 'emotional disclosure' in the palliative care setting. By mapping these to associated treatment objectives, outcome measures and explanatory frameworks, the review will inform future efforts to design and evaluate ED-based therapies in this population.Methods and analysisThe review will be guided by Arksey and O'Malley's five-stage scoping review framework and Levac's extension. The following electronic databases will be searched from database inception: CENTRAL, the Cumulative Index to Nursing and Allied Health Literature (CINAHL), PsycINFO, Scopus, Web of Science and MEDLINE. We will include peer-reviewed studies and reviews. We will also check grey literature, including clinical trial registers, conference proceedings and reference lists, as well as contacting researchers. Articles will be screened by at least two independent reviewers and data charted using an extraction form developed for this review. Results will be analysed thematically to create a taxonomy of interventions, outcome measures and theoretical frameworks.Ethics and disseminationThis review does not require ethical approval as it is a secondary analysis of pre-existing, published data. The results will inform future research in the development of ED-based interventions and evaluation of their efficacy in the palliative care setting. We will disseminate findings through peer-reviewed journals.
Project description:BACKGROUND:A notable gap in the evidence base for outpatient palliative care (PC) for cancer is that most trials were conducted in specialized oncology or academic centers with limited translation and further evaluation in "real-world" settings. Health systems are desperate for guidance regarding the most effective and sustainable PC service models. OBJECTIVE:Describe the study protocol to evaluate the dissemination of a previously tested nurse-led PC intervention (PCI) for patients with lung cancer and their family caregiver in community-based settings, lessons learned in adapting and implementing the PCI, and implications for future dissemination-translational efforts Design: Two-group, prospective sequential, quasi-experimental design with Phase 1 (Usual care) followed by Phase 2 (Intervention) setting/subjects. Three Kaiser Permanente Southern California sites. Patients with stage 2-4 nonsmall cell lung cancer and their caregiver. MEASUREMENTS:Standard measures of quality of life (QOL; FACT-L, FACIT- SP12, City of Hope Family QOL), symptom burden, distress, and caregiver preparedness and perceived burden. RESULTS:Adaptations were made to the PCI (comprehensive patient/caregiver assessment, interdisciplinary care planning, and patient/caregiver education) to harmonize with existing workflows, minimize burden to patients, caregivers, and the PC team, and maximize chances of sustainability. Implementation facilitators include external competitive pressures, internal readiness, and adaptability of the PCI. Barriers include the changing lung cancer therapeutic landscape and perceived need for PC support by patients and providers, insufficient staffing, and people-dependent processes. CONCLUSIONS:Efforts to disseminate and implement previously tested PC models into real-world community practices need to be more realistic and consider the local context.
Project description:BACKGROUND:The supportive hospice aged residential exchange (SHARE) is a new model of palliative care education that has been designed for residential aged care. The goal of SHARE is to help clinical staff improve palliative care within residential aged care facilities and to improve specialist palliative care nurses' knowledge and skill to care for frail older people. METHOD:The experiences of 18 bereaved families concerning the palliative care journey (both at the start and finish of a one-year implementation of SHARE) were explored using semi-structured interviews. RESULTS:Three themes were important to bereaved families' experience: communication with staff, systems of care, and hospice involvement. Sub-themes indicating changes in these three components of care between the start and finish of SHARE was identified. A fourth theme highlighted challenges (relationship with GP, staff shortages, and turnover) that continued across SHARE. CONCLUSION:Findings indicated that SHARE benefited families (improved communication and support) through the end of life journey of their relatives, but challenges remained.
Project description:BACKGROUND:Grieving relatives can suffer from numerous consequences like anxiety, depression, post-traumatic stress disorder (PTSD) symptoms, and prolonged grief. This study aims to assess the psychological consequences of grieving relatives after patients' death in French palliative care units and their needs for support. METHODS:This is a prospective observational multicenter mixed study. Relatives of adult patients with a neoplasia expected to be hospitalized more than 72?h in a palliative care unit for end-of-life issues will be included within 48?h after patient admission. End-of-life issues are defined by the physician at patient admission. Relatives who are not able to have a phone call at 6-months are excluded. The primary outcome is the incidence of prolonged grief reaction defined by an ICG (Inventory Complicate Grief)?>?25 (0 best-76 worst) at 6?months after patient' death. Prespecified secondary outcomes are the risk factors of prolonged grief, anxiety and depression symptoms between day 3 and day 5 and at 6?months after patients' death based on an Hospital Anxiety and Depression score (range 0-42)?>?8 for each subscale (minimal clinically important difference: 2.5), post-traumatic stress disorder symptoms 6?months after patient' death based on the Impact of Events Scale questionnaire (0 best-88 worst) score?>?22, experience of relatives during palliative care based on the Fami-Life questionnaire, specifically built for the study. Between 6 and 12?months after the patient's death, a phone interview with relatives with prolonged grief reactions will be planned by a psychologist to understand the complex system of grief. It will be analyzed with the Interpretative Phenomenological Analysis. We planned to enroll 500 patients and their close relatives assuming a 25% prolonged grief rate and a 6-month follow-up available in 60% of relatives. DISCUSSION:This study will be the first to report the psychological consequences of French relatives after a loss of a loved one in palliative care units. Evaluating relatives' experiences can provide instrumental insights for means of improving support for relatives and evaluation of bereavement programs. TRIAL REGISTRATION:NCT03748225 registered on 11/19/2018. Recruiting patients.