Distress Care Research Articles

Adapting a Preparatory Skills-Building Programme for Carers of People With Cancer Through Co-Design: The iCanSupport Project.

Health services rely upon carers to provide care for loved ones with cancer, yet many carers often feel ill-prepared for this role. Despite a multitude of programmes to support carer mental health, programmes that help carers feel better equipped to support a person with cancer are lacking. This study aimed to address this need by adapting an evidence-based intervention to be suitable for carers of people with cancer. This study used an exploratory, qualitative design consisting of experienced-based co-design and an in-depth stakeholder engagement strategy. An existing evidence-based programme to promote resilience in the context of providing care was adapted for relevance to carers for people with cancer via two co-design workshops with carers and healthcare professionals (n = 8). The resulting prototype programme was refined based on stakeholder consultations with staff and consumer members of cancer and carer support organisations across Australia (n = 16). Transcripts of the workshops, meetings and written feedback from carers were thematically analysed. Major programme developments were guided by three themes that emerged from the co-design workshops: 'creating value for carers', 'multiple contributors to carer distress' and 'the need for flexible implementation'. Analysis of the stakeholder consultation data showed that the themes of 'diversity in carer journeys' and 'creating impact for carers' were key to further tailoring the programme for applicability to practice. An adapted programme called 'iCanSupport' resulted from the process, with key adaptations being more relevant case study scenarios for carers and greater flexibility in accessing and engaging with the intervention to accommodate a range of carer circumstances. Programmes to build skills for becoming a carer for someone with cancer are absent, yet they are desired by carers. Using co-design provided a user-centric approach to adapt an existing evidence-based programme. Programme evaluation is required to determine the effectiveness of the co-designed approach in improving carer preparedness among a range of cohorts. Carers and consumers with lived experience and others involved in supporting consumers made valuable contributions to co-designing and refining the programme in addition to providing ongoing guidance in the unfolding analysis and reporting of this research.

Accepting and committing to caregiving for schizophrenia—a mixed method pilot study

BackgroundEnd of traditional institutionalized psychiatric care, diagnostic complexities, and associated stigma often negatively impact the social networks of caregivers, making them experience social isolation. Not the “identified patients”, caregiver perspectives are typically overlooked further adding to anticipatory stigma resulting in social death among them. Caregiving experience results in developing coping skills, preventing carers from responding to the nuances of the context, and identifying the useful rules— “Experiential Avoidance”. Psycho-education is typically combined with other formal treatment programs for case conceptualization, and to provide a clear rationale for the treatment approach but less as a distinct psychotherapy. Borrowing the philosophy of Functional Contextualism, the present study developed a “Present-Moment Awareness” guided psychoeducational intervention. The aim was to reduce schizophrenia caregiver burden and anticipatory stigma and promote the value of caregiver participation as ‘experts by experience’.MethodFive family caregivers of remitted schizophrenia patients were recruited using purposive sampling. Pre-post measure was taken on caregiver burden, caregiving experience, sense of personal mastery, and caregiving competence. Results were analysed quantitatively and qualitatively.ResultsA significant decrease in caregiver burden, stigma, and negative effects on the family in post-intervention was observed. Self-compassion led to a rise in a sense of empowerment.ConclusionA caregiver-centred “Present-Moment Awareness” guided psycho-education for schizophrenia caregivers can be considered a possible means to address perceived stigma in caregivers and to reduce associated distress of carers.

Cross-condition risk and protective factors for psychosocial distress in parents and carers of children and young people with appearance-affecting conditions and injuries

Alongside typical parenting challenges, initial condition-specific research suggests thadifferent experiences and support needs.t parents of children with different visible differences may experience similar psychosocial difficulties. Despite this, large-scale cross-condition research to identify risk and protective factors for parental distress and psychosocial adjustment has been lacking. Two hundred and nine parents and carers of children with a range of visible differences completed an online survey comprised of standardised outcome measures, study-specific measures, and open-ended questions. Multiple regression modelling identified possible risk and protective factors, and data collected via open-ended questions were analysed using content analysis. Findings support themes previously identified in small-scale cross-condition qualitative research with parents of children with visible differences. Risk factors for parental negative affect and stress included parental reports of the noticeability of their child’s visible difference and teasing. Protective factors included good parent-child communication, self-compassion, knowledge of their child’s condition and satisfaction with treatment. The risk and protective factors identified provide important insight into the experiences of this parent population and indicate possible avenues for psychosocial intervention.

Intervention for an Australian carer of a person with dementia: A single case study

Caring for a person with dementia can negatively impact the physical, mental, and social wellbeing of an informal carer. Providing complex and challenging care often results in carer burden, stress, and distress, which can continue even when the care recipient transitions into an aged care facility. This case study aims to demonstrate that optimising carer support, knowledge, skill acquisition, and promotion of wellbeing benefits carers and those they care for across contexts. It provides a weekly account of an informal Australian carer’s experience with the STrAtegies for RelaTives (START) manualised intervention program. The study used reliable change indices, standardised measures, and carer surveys to provide insights into the carer’s experience of the program and outcomes during and after the therapy. The results showed reliable and clinically significant change, demonstrating an improvement in all measures. The carer’s mood symptoms and their perceived burden of care decreased. The carer also reported decreased dementia symptoms in their care recipient. Both the carer and the care recipient experienced increased quality of life. These findings are consistent with recent literature on the feasibility of the START program and are aligned with the National Dementia Plan.

A qualitative exploration of the role of a palliative care pharmacist providing home-based care in the rural setting, from the perspective of health care professionals.

Pharmacists are often not recognised as a core part of palliative care teams, despite their ideal placement to assist with the burden of medication management. This study explored the role of pharmacists working in the rural palliative care team, in the home-based setting. Health care professionals working with palliative care patients in rural South Australia participated in semi-structured interviews. Data were analysed using thematic analysis. Data from 20 participants identified 10 themes. Theme 1: This model of care gives patients a choice. Theme 2: The pharmacist is a trusted source of support and information. Theme 3: Patient, carer and family distress is reduced. Theme 4: Enables patients to stay at home by improving medication knowledge and decreasing burden; 4.1-Patient, carer and family's understanding about medication management is improved, 4.2-Patient, carer and family travel is decreased, 4.3-Burden associated with getting to the doctor is decreased. Theme 5: Communication between all parties is enhanced; 5.1-Enhanced communication between the patient and health care team, 5.2-Enhanced communication within the health care team. Theme 6: Patient, carer and family burden of coordinating prescriptions and medications is reduced. Theme 7: Benefits health care professionals by improving medication knowledge, reducing workload and stress; 7.1-Understanding about medications and their management is improved, 7.2-Workload is reduced, 7.3-Work-related stress is reduced. Theme 8: The disparity of care between rural and urban patients is reduced. Theme 9: Helps to address rural workforce shortages. Theme 10: Challenges of this model of care; 10.1-A need for greater pharmacist capacity to meet demand, 10.2-A need for increased and sustained funding for the pharmacist role, 10.3-Large amount of travel to get to patients. Rural health care professionals are supportive of pharmacists working as part of the palliative care team in home-based settings and identified many benefits of this model of care.

Skills-based online self-help program for carers of people with an eating disorder (SupportED): A case series evaluation.

To investigate the acceptability, feasibility, and preliminary effectiveness of "SupportED," a novel, online, self-paced skills-based program for carers/support people of those with lived and/or living experience of an eating disorder (ED). Carers of a loved one with an ED were invited to undertake a five-module skills-based (one core module, four optional modules) online program at their own pace. Modules cover general information about EDs, communication, practical skills, treatment engagement, and recovery. Participants completed demographics and were assessed using EDSIS, CASK, and DASS-21 for caregiver burden, skills, and distress, respectively, at program completion and 3-month follow-up. Feedback on the program and modules was also collected. Most carers (65%; 82/126) completed the core module of the program, which is on par with other online learning programs. Nearly half of program completers responded to the 3-month follow-up (n = 39). On average, carers rated the program as relevant and useful and found the information validating and easy to understand, albeit a few carers found the program time-consuming and technically challenging. Intent-to-treat (ITT) linear mixed models demonstrated the preliminary effectiveness of the program for improving carer burden and skills, although the change in carer distress was non-significant. Results of this case series evaluation suggest SupportED is an acceptable and feasible program for carers and may improve burden and support skill development. Although the online, self-paced format was highly rated, small improvements to improve acceptability were suggested. Reasons for a lack of impact on carer distress are discussed. This article describes a case series evaluation of "SupportED," an online skills-based support program for families, carers, and supporters of people with lived experience of an eating disorder. This is the first online carer support program that is designed to be inclusive of all carer types (e.g., partners, siblings) for all eating disorder presentations. Findings suggest the program's suitability and helpfulness for reducing carers' load and bolstering skills and knowledge.

P80: Implicit emotional ambivalence and emotional distress in family carers of people with dementia: Exploratory study.

Objective:Caring for a relative with dementia is a chronic stress situation related to negative consequences such as elevated depressive and anxiety symptoms. A possible mediator variable explored to explain pathways from chronic stress to emotional distress is emotional ambivalence towards the care-recipient (the simultaneous experience of positive and negative feelings towards the care-recipient). Emotional ambivalence, measured with questionnaires, presents significant associations with depression and anxiety in family carers of people with dementia. However, the self-report of emotional ambivalence is susceptible to being influenced by social desirability. The aim of this study is to present preliminary results that analyze implicit ambivalence and its association with emotional distress in family carers of people with dementia.Methods:54 caregivers participated in the study (mean age = 61.2, SD = 12.92, 81.5% women). To explore implicit emotional ambivalence, we adapted a sequential priming paradigm developed to measure implicit ambivalence about significant others (Zayas & Shoda, 2015). Two priming stimuli were used: a) neutral (e.g., RRR) and b) valenced prime (i.e., the name of the care-recipient). The targets were positive and negative words that participants have to categorize as positive or negative.Results:A facilitation-inhibition indexes for positive and negative targets were calculated by subtracting the mean reaction time (RT) for valenced prime from the mean RT for neutral primes. Positive values show a facilitation effect of the valenced prime (i.e., the name of the care-recipient), and negative values inhibition. Participants were classified depending on their results of this indexes: a) positive (facilitation of positive information, inhibition of negative information), b) negative (facilitation of negative information, inhibition of positive information), c) flat (inhibition of positive and negative information), and d) ambivalence (facilitation of positive and negative information). ANOVAS were performed to explore differences between groups in emotional distress. The preliminary results showed that the ambivalence group might present more depressive symptoms compared with the positive group.Conclusion:This is the first study that analyzed implicit ambivalence in family carers of people with dementia. The preliminary results show the relevance of exploring implicit processes to explain emotional distress in this population.

FC14: Measuring the prevalence of sleep disturbance in people living with dementia in the community. A systematic review and meta-analysis

Objectives:Sleep disturbance affects all aspects of mental and physical functioning and quality of life and may lead to or worsen Alzheimer’s disease. Sleep disturbances in people with dementia living at home predicts care home admission and carer distress. Estimates of the prevalence of sleep disturbance vary, and it is unclear how prevalence rates differ according to setting. We conducted the first systematic review and meta-analysis on the prevalence of sleep disturbances in people living with dementia in the community. We aimed to examine demographic predictors and whether overall prevalence has changed over time.Methods:We searched Embase, MEDLINE and PsycINFO for studies reporting the prevalence of sleep disturbances in people with dementia living at home. We meta-analysed data and calculated the pooled prevalence of sleep disturbances in people with dementia overall and in dementia subtypes. We used meta-regressions to investigate the effects of study characteristics, publication dates and participant demographics.Results:Eleven studies fulfilled the inclusion criteria. The pooled prevalence of any symptoms of sleep disturbance was 26% (95% confidence intervals (CI): 23-30%; n= 2719) and of clinically significant sleep disturbance 19% (95% CI: 13-25%; n= 2753). The pooled prevalence of sleep disturbance symptoms was significantly lower among people with Alzheimer’s disease (24%; 95% CI: 16-33%, n=310) than Lewy body dementia (49%; 95% CI: 37-61%, n=65). Meta-regression analysis did not find that publication year, participant’s age, sex and study quality predicted prevalence.Conclusion:Sleep disturbances are common among people with dementia living in the community, especially in Lewy body dementia. There was no change in prevalence according to publication dates (between 2002 and 2018). This suggests that possible advances in treatment of sleep disturbance are not reflected in improvements for people living with dementia. This highlights the need to develop effective intervention strategies, reducing the prevalence of sleep disturbances in people living with dementia living at home in the community.

The relationship between social support, coping strategies and psychological distress and positive mental well-being in carers of people with borderline personality disorder

BackgroundInformal carers of people with BPD experience high levels of burden and psychological distress relative to other populations. There is a scarcity of research evidencing the influence of modifiable factors on carer outcomes to inform interventions. This study aimed to investigate the relationship between social support, coping strategies and psychological distress and positive mental well-being in this carer population.MethodsIn this cross-sectional study, 1207 carers completed the McLean Screening Instrument for BPD-Carer Version, the Brief COPE, the Multidimensional Scale of Perceived Social Support, the Kessler Psychological Distress scale, the WHO-5 Well-being Index, and the Coronavirus Anxiety Scale. Data for 863 participants who met the inclusion criteria were analysed.ResultsCarers reported low positive mental well-being and high psychological distress. Perceived social support and several coping strategies were significant unique predictors of psychological distress and positive mental well-being. Perceived social support and positive reframing were the strongest predictors of higher positive mental well-being and lower psychological distress. Self-blame, behavioural disengagement and substance use were the strongest predictors of adverse outcomes.ConclusionsThe findings evidence modifiable factors that may be used to improve informal carer outcomes and indicate that carer interventions may be improved by focusing on reducing the use of self-blame, behavioural disengagement and substance use, and development of quality social support and skills to positively reframe caregiving situations.

Caring for a person living with dementia: identifying and assessing a carer's needs.

As the population ages and so do the numbers of people with dementia, there will also be an increase in the number of unpaid family carers. Estimates suggest that one in three of us will become a carer for someone with dementia during our lifetime, some caring for more than one person diagnosed with dementia in their family. There are currently over 700 000 people in the UK acting as primary unpaid carers for people with dementia, all of whom make a substantial contribution, both financially and physically, to their care and support. Carers of people with dementia can experience high levels of carer burden and distress as well poor health and wellbeing due to their caring roles. However, they can sometimes be less than visible to health and social care services as they may not identify themselves as carers or their needs may not be easily recognised which leaves them at risk. Identifying people in caring roles and assessing their needs are the first two steps in supporting them. Community nurses are well placed to do this within their roles.

Exploring older care recipients’ sleep status as a predictor for informal carer distress: evidence from New Zealand’s interRAI home care assessment data

ObjectivesUnderstanding factors affecting informal carers’ well-being is important to support healthy ageing at home. Sleep disturbances of care recipients are increasingly recognised as affecting the well-being of both parties. This...

Investigating self-blame and trauma symptoms in parents of young people with anorexia nervosa.

Caring for a young person with anorexia nervosa (AN) has been associated with psychological distress and found to be a traumatic experience. This can have an impact on patient and family outcomes. This study aimed to investigate whether self-blame cognitions contribute to post-traumatic stress disorder (PTSD) symptoms in parents of young people with AN. A cross-sectional design was used. One hundred and twenty-three parents of young people with AN completed a range of questionnaires assessing self-blame cognitions and PTSD symptoms. Overall, levels of self-blame cognitions were significantly higher in those experiencing higher levels of PTSD symptoms compared to low levels. Additionally, levels of self-blame cognitions significantly predicted PTSD symptoms over and above demographic factors and illness severity, accounting for 22% of unique variance in PTSD symptoms. The findings suggest that negative appraisals regarding self-blame for their child's eating disorder contributed to the potential maintenance of PTSD symptoms. Parents presenting with thoughts of self-blame would benefit from further support to reduce these feelings and, subsequently, reduce carer distress.

Parent and Carer Skills Groups in Dialectical Behaviour Therapy for High-Risk Adolescents with Severe Emotion Dysregulation: A Mixed-Methods Evaluation of Participants' Outcomes and Experiences.

There is an established evidence-base for dialectical behaviour therapy for adolescents (DBT-A) in the treatment of young people with severe emotion dysregulation and related problems, including repeated self-harm and suicidal behaviours. However, few studies have reported on parental involvement in such treatments. This study aims to explore the outcomes and experiences of participants of a dedicated skills group for parents and carers embedded within an adapted DBT-A programme in the United Kingdom. This study was conducted within a specialist outpatient Child and Adolescent Mental Health Services (CAMHS) DBT programme in the National Health Service (NHS) in London. Participants were parents and carers of adolescents engaged in the DBT-A programme. Participants attended a 6-month parent and carer skills group intervention and completed self-report measures relating to carer distress, communication and family functioning, at pre-intervention and post-intervention. Following the intervention, semi-structured interviews were also completed with a subgroup of participants to explore their experiences of the skills group and how they perceived its effectiveness. Quantitative and qualitative methods were used to analyse the data collected from participants. Forty-one parents and carers completed the intervention. Participants reported a number of statistically significant changes from pre- to post-intervention: general levels of distress and problems in family communication decreased, while perceived openness of family communication and strengths and adaptability in family functioning increased. A thematic analysis of post-intervention interviews examining participant experiences identified six themes: (1) experiences prior to DBT; (2) safety in DBT; (3) experiences with other parents and carers; (4) new understandings; (5) changes in behaviours; and (6) future suggestions. Parents and carers who attended a dedicated DBT skills groups, adapted for local needs, reported improvements in their wellbeing, as well as interactions with their adolescents and more general family functioning, by the end of the intervention. Further studies are needed which report on caregiver involvement in DBT.

Psychosocial interventions for personality and behavior changes in adults with a brain tumor: A scoping review.

The objective of this scoping review was to describe the intervention characteristics and effectiveness of psychosocial interventions aimed at managing personality and behavior changes in people with brain tumors. A secondary objective was to explore if these interventions had an impact on outcomes for carers. Personality and behavior changes considered included aggression, apathy, paranoia, disinhibition, and emotional lability. This review was conducted following the Joanna Briggs Institute methodology for scoping reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) extension for scoping reviews. Searches were conducted in PsycINFO, CINAHL, Medline (Ovid), and Scopus. We synthesized studies published from 1996 to 2022 that evaluated interventions to manage brain tumor related personality and behavioral changes in adults. A data extraction tool were used based on the Joanna Briggs Institute template. Results are presented in a summary table and a narrative synthesis was conducted. Three thousand and five hundred and ninety-four records were screened. Title and abstract screening resulted in 29 potentially eligible studies. Full screening excluded 24 articles and 5 interventions met the inclusion criteria. The interventions were diverse in duration, delivery modality, setting, and participation (eg, the patient individually or patient and carer). The interventions reported improvements in the targeted personality and behavior change symptoms for patients with primary brain tumors. Four studies included a measure of personality and behavior change symptoms and two studies included a measure of outcomes for carers and reported improvements in carer knowledge and a reduction in carer distress. All studies sampled fewer than 100 participants. Studies had limited follow-up data and different tools were used to assess the presence and nature of personality and behavior changes. There is a dearth of psychosocial interventions to support patients and their carers to manage brain tumor related personality and behavior changes.

Comparative effectiveness of psychological interventions for treating the psychological consequences of sexual abuse in children and adolescents: a network meta-analysis.

Comparative effectiveness of psychological interventions for treating the psychological consequences of sexual abuse in children and adolescents: a network meta-analysis.

Occurrence and correlates of anxiety and depression in carers of autistic children across three nations

Purpose Caring for an autistic child is associated with elevated stress, anxiety and depression. Although some data suggest that ‘child’ or ‘carer’ factors may moderate the severity of carer distress, relatively few international comparisons have been made, limiting the generalizability of previous findings. This study aimed to address this issue. Method A survey-based comparison was made of carers from three nations (Australia, Denmark, Greece), and the effects of demographic, child, and carer variables upon carer anxiety and depression were investigated. Results Only limited cross-nation consistency was found for nation, child, or carer variables and their effects upon carer anxiety or depression. Conclusion The application of universal treatment models for carer anxiety and depression may be of differing value across nations.

Giving and receiving thanks: a mixed methods pilot study of a gratitude intervention for palliative patients and their carers

BackgroundPsychological research examining the nature and workings of gratitude has burgeoned over the past two decades. However, few studies have considered gratitude in the palliative care context. Based on an exploratory study which found that gratitude was correlated with better quality of life and less psychological distress in palliative patients, we designed and piloted a gratitude intervention where palliative patients and a carer of their choice wrote and shared a gratitude letter with each other. The aims of this study are to establish the feasibility and acceptability of our gratitude intervention and provide a preliminary assessment of its effects.MethodsThis pilot intervention study adopted a mixed-methods, concurrent nested, pre-post evaluation design. To assess the intervention’s effects, we employed quantitative questionnaires on quality of life, quality of relationship, psychological distress, and subjective burden, as well as semi-structured interviews. To assess feasibility, we considered patients and carers’ eligibility, participation and attrition rates, reasons for refusal to participate, appropriateness of intervention timeframe, modalities of participation, and barriers and facilitators. Acceptability was assessed through post-intervention satisfaction questionnaires.ResultsThirty-nine participants completed the intervention and twenty-nine participated in interviews. We did not find any statistically significant pre/post intervention changes for patients, but found significant decrease in psychological distress for carers in terms of depression (median = 3 at T0, 1.5 at T1, p = .034) and total score (median = 13 at T0, 7.5 at T1, p = .041). Thematic analysis of interviews indicates that overall, the intervention had: (1) multiple positive outcomes for over a third of interviewees, in the form of positive emotional, cognitive, and relational effects; (2) single positive outcomes for nearly half of interviewees, who experienced emotional or cognitive effects; (3) no effect on two patients; and (4) negative emotional effects on two patients. Feasibility and acceptability indicators suggest that the intervention was well received by participants, and that it should adopt flexible modalities (e.g. writing or dictating a gratitude message) to ensure that it is feasible and adapted to individual needs and preferences.ConclusionsLarger scale deployment and evaluation of the gratitude intervention, including a control group, is warranted in order to have a more reliable evaluation of its effectiveness in palliative care.

Toward a more comprehensive understanding and support of parents with a child experiencing an eating disorder.

The majority of eating disorder (ED) carer research has been conducted with parents of adult patients, using qualitative methodologies, focusing on carer burden and distress during treatment. This article aimed to use results from a large, national, quantitative survey of parents of child or adolescent patients as a springboard for encouraging a more comprehensive investigation of parent experiences. The online survey assessed treatment experiences and parent distress (DASS-21) but also less commonly investigated topics including symptom detection, experiences with primary care providers, and impacts on parent physical and psychological health, romantic relationship, finances, and employment. Key findings included parents (N=439; 91.6% female): were the first person to notice the ED symptoms in 81.8% of cases; had only a 14.7% chance of a helpful experience with both the first general practitioner and first therapist they saw; needed to see M=3.55 therapists before finding one that could help; reported worse than normal psychological health (96.0%), physical health (70.5%), and romantic relationship (92.7%); required M=70.06 days leave from work to care for their child (per household); and 91.8% accessed treatment in the private sector with median out-of-pocket expenses of AUD 10,0001-AUD 20,000. Recommendations to address research and practice gaps include: increased focus on supporting initial symptom detection; improving primary care and treatment experiences; and, increasing the number of ED treatment providers. Urgently needed are solutions to the overwhelming demand for services and clearly, more support for parents. Such strategies are vital for reducing the overall burden of EDs. Most eating disorder (ED) caregiver research has focused on experiences of supporting adult patients during treatment. This article used a large national survey to explore parent experiences of their child or adolescent's ED in less commonly investigated areas, such as detection, primary care, impact on parent physical and psychological health, romantic relationship, employment and finances. Findings suggested mixed experiences with health care providers and a very significant toll of the illness on the domains measured. Recommendations were provided for how these important areas can be addressed.

Moral distress in carers for people with an intellectual disability who died during the COVID-19 pandemic, a template analysis extending the Barlem and Ramos model of moral distress.

This article aims to understand moral distress in carers of people with an intellectual disability during the COVID-19 pandemic. Nine staff carers of seven people with an intellectual disability, who had been participants of the IDS-TILDA study in Ireland, who died during the COVID-19 pandemic participated in in-depth, semi-structured telephone interviews. Template analysis was used to analyze the interviews. Obstructions in performing their duties left carers feeling powerless and experiencing moral conflict distress, moral constraint distress and moral uncertainty distress. Most managed to connect to the moral dimension in their work through peer support, understanding they fulfilled the wishes of the deceased, and/or thinking about how they or others did the best they could for the person they were caring for. This research demonstrates that while restrictions may have been effective in reducing the spread of COVID-19, they were potentially damaging to carer wellbeing.

Carer preparedness improved by providing a supportive educational intervention for carers of patients with high-grade glioma: RCT results

BackgroundHigh-grade glioma (HGG) is a rapidly progressing and debilitating disease. Family carers take on multiple responsibilities and experience high levels of distress. We aimed to deliver a nurse-led intervention (Care-IS) to carers to improve their preparedness to care and reduce distress.MethodsWe conducted a randomised controlled trial (ACTRN:12612001147875). Carers of HGG patients were recruited during patients’ combined chemoradiation treatment. The complex intervention comprised four components: (1) initial telephone assessment of carer unmet needs; (2) tailored hard-copy resource folder; (3) home visit; and, (4) monthly telephone support for up to 12 months. Primary outcomes included preparedness for caregiving and distress at 2, 4, 6 and 12 months. Intervention effects were estimated using linear mixed models which included a time by group interaction. Secondary outcomes included anxiety, depression, quality of life, carer competence and strain.ResultsWe randomised 188 carers (n = 98 intervention, n = 90 control). The intervention group reported significantly higher preparedness for caregiving at 4 months (model β = 2.85, 95% CI 0.76–4.93) and all follow-up timepoints including 12 months (model β = 4.35, 95% CI 2.08–6.62), compared to the control group. However, there was no difference between groups in carer distress or any secondary outcomes.ConclusionsThis intervention was effective in improving carer preparedness. However, carer distress was not reduced, potentially due to the debilitating/progressive nature of HGG and ongoing caring responsibilities. Future research must explore whether carer interventions can improve carer adjustment, self-efficacy and coping and how we support carers after bereavement. Additionally, research is needed to determine how to implement carer support into practice.