Family Caregiver Education Research Articles

Recognizing the Unseen: Enhancing Family Caregiver Education in Morocco's Cancer Care.

During my thesis, I had the opportunity to work closely with family caregivers of cancer patients. This allowed me to meet these individuals and hear their stories filled with suffering. A large part of their complaints centered on the lack of information and training necessary to properly care for their ill relatives. Often, they find themselves responsible for a patient at home without possessing the required skills, sometimes knowing only the dosage of treatments to administer. This lack of training can lead to serious complications, such as bedsores in immobile patients or urinary infections. This experience underscores the critical need for comprehensive caregiver education in Morocco, a country where family caregivers play a crucial role in oncology care, especially in home-based support.To achieve this, the government, health care professionals, and NGOs must collaborate to develop accessible educational programs that equip caregivers with the necessary skills and knowledge.

Exploration of family caregivers’ experiences on coping in dementia care in Ghana: a phenomenological study

BackgroundDementia is an important public health and geriatric concern for sub-Saharan African countries, including Ghana. Evidence shows that persons living with dementia are often supported and cared for by family caregivers in the community. In the execution of these services to the persons living with dementia, family caregivers are overwhelmed and experience heightened stress that results in serious repercussions. Therefore, the aim of this study was to explore family caregivers’ experiences on coping in dementia care in Ghana.MethodsAdopting a descriptive phenomenological design, individual face-to-face interviews were conducted among thirty unpaid family caregivers of persons living with dementia in Ghana. Semi-structured interview guides were used. The data analysis process followed Clarke and Braun’s framework analysis.ResultsSix themes were generated from the textual data. These themes were captioned as: (1) empathy and perspective-taking; (2) family support and cohesion; (3) coaxing and pampering of persons living with dementia; (4) humour and positive communication; (5) spiritual support; and (6) ethical/moral consideration in dementia caregiving.ConclusionWe conclude that unpaid family caregivers of persons living with dementia in Ghana adopt varied strategies to cope with the strains of caregiving. Healthcare facilities that provide services to persons living with dementia could incorporate caregiver preparatory training or education for family caregivers. This training should focus on briefing family caregivers about the potential strains that they are likely to encounter. Also, the training could focus on equipping family caregivers with the knowledge and skills to effectively communicate and care for the persons living with dementia using person-centered approaches. Key stakeholders such as the Ghana Health Service and Alzheimer’s Ghana must raise awareness about the dangers of caregivers’ violation of the autonomy and freedom of persons living with dementia as they navigate through the challenges of caregiving. Lastly, faith-based institutions need to be considered as key stakeholders in dementia interventions since they could play a critical role.

Clinician and Family Caregiver Perspectives on Deprescribing Chronic Disease Medications in Older Nursing Home Residents Near the End of Life.

Nursing home (NH) residents with limited life expectancy (LLE) who are intensely treated for hyperlipidemia, hypertension, or diabetes may benefit from deprescribing. This study sought to describe NH clinician and family caregiver perspectives on key influences on deprescribing decisions for chronic disease medications in NH residents near the end of life. We recruited family caregivers of veterans who recently died in a Veterans Affairs (VA) NH, known as community living centers (CLCs), and CLC healthcare clinicians (physicians, nurse practitioners, physician assistants, pharmacists, registered nurses). Respondents completed semi-structured interviews about their experiences with deprescribing statin, antihypertensive, and antidiabetic medications for residents near end of life. We conducted thematic analysis of interview transcripts to identify key themes regarding influences on deprescribing decisions. Thirteen family caregivers and 13 clinicians completed interviews. Key themes included (1) clinicians and caregivers both prefer to minimize drug burden; (2) clinical factors strongly influence deprescribing of chronic disease medications, with differences in how clinicians and caregivers weigh specific factors; (3) caregivers trust and rely on clinicians to make deprescribing decisions; (4) clinicians perceive caregiver involvement and buy-in as essential to deprescribing decisions, which requires time and effort to obtain; and (5) clinicians perceive conflicting care from other clinicians as a barrier to deprescribing. Findings suggest a need for efforts to encourage communication with and education for family caregivers of residents with LLE about deprescribing, and to foster better collaboration among clinicians in CLC and non-CLC settings.

Asthma Academy for Family Caregivers: A Quality Improvement Project.

Background: Asthma affects one in every 12 children in United States with significant prevalence in underserved groups. Family caregiver education is essential to improve childhood asthma control. The literature suggests that family caregivers' lack of knowledge about asthma management affects their children's health outcomes. An evidence-based education program that improves caregivers' asthma knowledge may improve the family's well-being. Objectives: The goal of the Asthma Academy project is to improve the disease management of children with asthma by providing an in-person family caregiver education program. The main objectives are to (a) improve family caregivers' asthma knowledge, (b) enhance their confidence in asthma management, and (c) evaluate caregivers' satisfaction with the education program. Method: This quality improvement project used an in-person educational program with an asthma education video resource for caregivers of children with asthma. Results: The family caregivers' asthma knowledge improved significantly after the education. The confidence levels in caring for children with asthma increased. Caregivers' satisfaction with the Asthma Academy education session was favorable. Conclusions: The Asthma Academy was an acceptable and effective delivery method of education for family caregivers of children with asthma in the in-patient setting. Empowering family caregivers of vulnerable children through asthma education may improve child health outcomes and mitigate complications from asthma. Implications for Nursing Nurses and clinicians are steward of providing patient education. Individualized, patient-tailored education is recommended.

DEMENTIA CARE IN ASIAN AND LATINO COMMUNITIES: PERSPECTIVES FROM FAMILY CAREGIVERS AND SERVICE PROFESSIONALS

Abstract While community-based support and services are increasingly available to family caregivers (FCGs) of a person with dementia (PWD), those from ethnic minority groups tend to be underserved. This study aimed to identify unaddressed challenges to dementia care and uncover strategies to better assist FCGs within Asian and Latino communities in Michigan. Focus group and individual interviews were conducted with service professionals (SPs) and FCGs. Specifically, we ran two focus groups with SPs (n=11), and one with Asian FCGs (n=8). Four individual telephone interviews were conducted with Latino FCGs. Sessions were audiotaped and conducted in the participants’ preferred language, then transcribed and translated into English for analysis. Shared challenges to dementia care included: transportation to services; lack of translation services and language-concordant specialists, daycare/respite workers, and in-home care staff; and feelings of shame in needing support. Latino FCGs reported the emotional burden of witnessing the cognitive decline of their PWD, whereas Asian FCGs focused on challenges related to the behaviors of PWD. SPs and FCGs expressed the desire for more education for FCGs on dementia and self-management of stress. Limited technology literacy impacted their access to digital education. Culturally informed outreach and intervention strategies were recommended, such as partnering with community leaders and adapting cultural practices (e.g., providing family-oriented events, and using social media popular among specific ethnic groups). This study highlights the sociocultural challenges and practical outreach approaches for FCGs in Asian and Latino communities by integrating the perspectives of FCGs and SPs involved in dementia care.

Use and Impact of Simulation in Family Caregiver Education: A Systematic Review.

Involving family caregivers in a team-based approach has become increasingly important. Simulation-based interventions in nursing have been effective. However, the effect of simulation on family caregiver education is not widely known and is limited. This study aimed to describe the current state of simulation-based interventions in family caregivers of patients with chronic diseases. This systematic review was reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses. The literature search was conducted in PubMed, CINAHL, PsycINFO, and Cochrane with a medical librarian's help. This review included quantitative, primary, peer-reviewed English-written research articles that reported outcomes for family caregivers. We focused on the data about purpose, design, setting, population, intervention characteristics, and outcomes. Before analyzing the selected studies, we evaluated the risk of bias using the revised Cochrane Risk-Of-Bias tool for randomized trials. Our search yielded 9 articles that met the inclusion criteria. The majority of the 9 articles analyzed were designed in a quasi-experimental design. In addition, most studies focused on certain diseases and used low-fidelity simulators. The simulation content mainly focused on technical simulations to help care for patients. Some simulations had a positive influence on family caregivers' knowledge, attitudes, and skills. We expect more simulation-based interventions for caregivers, especially those targeting diverse populations, using appropriate modalities and randomized control designs.

Stroke severity to determine musculoskeletal symptoms in family caregivers.

the objective of this study is to examine the relationship between the musculoskeletal problems experienced by the family members who care for stroke patients, physical health and disability levels. the subjects included in the study were patients and family caregivers admitted to the Kanuni Sultan Suleyman Training and Research Hospital Physical Medicine and Rehabilitation outpatient clinic with a stroke diagnosis between May 30 th, 2019, and May 30 th, 2021. The caregivers were assessed using the Extended Nordic Musculoskeletal Questionnaire. Validated scales were employed to evaluate stroke patients' physical health and disability level. a total of 104 stroke patients and 104 caregivers who met our inclusion criteria took part in this study. Low back complaints in the last month were associated with the patients' Functional Ambulation Score(FAS), Functional Independence Measure (FIM), Stroke Impact Scale (SIS) and Brunnstrom scores. Neck pain was the second musculoskeletal complaint, but was not statistically associated with patient-related factors. Upper limb problems were associated with FAS, FIM, SIS, Brunnstrom and the Modified Ashworth Scale scores. according to our findings, the low back is the body area most affected by musculoskeletal complaints in family caregivers of stroke patients, closely related to the patients' functional capacity and disability levels. NCT04901637 (1) Stroke survivors highly depend on informal caregivers for daily living. (2) Family caregivers are at an increased risk of experiencing musculoskeletal problems. (3) The caregivers' musculoskeletal symptoms are related to the level of the patient disability. (4) Preventive medicine should become a part of nursing education for family caregivers.

Delirium education for family caregivers of patients in the intensive care unit: A pilot study.

Delirium, an acute change in mental state, seen in hospitalized older adults is a growing public health concern with implications for both patients and caregivers; however, there is minimal research on educating caregivers about delirium. Utilizing family caregivers to assist with delirium management in acute care settings demonstrates improved health outcomes supporting the need for patient and family centered care. The primary aims of the study were to determine feasibility of implementing a delirium education video for caregivers of patients in an adult oncology intensive care unit and compare delirium knowledge to caregivers in a control group. A quasi-experimental design comprised of 31 family caregivers of adult patients in an oncology intensive care unit to determine feasibility of implementing a delirium education video. The results demonstrate feasibility of implementing a caregiver education video in-person and virtually. While total delirium knowledge scores were not statistically significant, knowledge gained within the delirium presentation subgroup was significant (p=.05). This study demonstrates feasibility of implementing a caregiver education video and findings support further research in this area. Collaborating with caregivers to develop virtual video education for delirium allows for a versatile approach to connect with caregivers to support their caregiving role.

Demographic Profile, Health, and Associated Factors of Family Caregivers and Functionality of Hospitalized Older Adults: Cross-Sectional, Exploratory, and Descriptive Study.

The longevity of the world population can contribute to an increase in hospitalizations and, consequently, to the emergence of functional limitations, resulting in the need for family caregivers. Hospitalized older adults may become dependent and require more care, increasing the burden on family caregivers. Thus, the nursing team in the hospital environment faces a new situation: an increase in the number of older adults occupying hospital beds and the presence of their family caregivers. We aimed to analyze the association between the demographic variables of interest and the self-rated health of family caregivers and to describe the functionality of older adults hospitalized in a university hospital in the Amazonian context. This cross-sectional, quantitative, exploratory, and descriptive study was carried out through individual interviews with 98 interviewees, divided into 49 family caregivers and 49 older adults hospitalized in the surgical clinic sector of a university hospital in Brazil between February and March 2023. Demographic data and health conditions were collected from family caregivers, and to describe the functionality of hospitalized older adults, the Barthel Index was applied. Descriptive (frequency and percentage) and inferential analyses were used, and the student t test was applied. The significance level of 5% was adopted. Among the 49 family caregivers, the majority were women (n=40, 81.6%) with an average age of 46.9 (SD 13.3) years. Most were single (n=28, 57.1%) and had completed an average level of education (n=26, 53.1%). Additionally, 25 (51%) caregivers were caring for their parents. Regarding health conditions, respondents self-assessed their health as good (25/49, 51%; P=.01), and they considered that their health status was not affected by the provision of care (36/49, 73.5%; P=.01). There was a significant association between demographic variables (ie, gender, age, and education) and self-assessment of family caregivers (P=.01, P=.01, and P=.04, respectively). Of the 49 older adults hospitalized, the majority (n=31, 63.2%) were men, with a mean age of 69.2 (SD 7.12) years. Regarding the assessment of functionality, most older adults were classified as having mild dependence on care (n=23, 46.9%), specifically in the age group between 60 and 69 years (21/49, 67.8%). The data revealed that female gender, age, and education of family caregivers contributed favorably to the provision of care to hospitalized older adults with a lower degree of functional dependence. It is important to emphasize that during the older adult's hospitalization, the family caregiver should not be seen as a delegation of responsibilities or as a complement of human resources to assist in their recovery. Health professionals need to implement assertive interventions so that the family caregiver functions as a therapeutic resource.

Comparison of palliative care education for family caregivers in high-and-low-income countries: An integrative review.

In most resource-limited countries, palliative care is still under development. Despite the differences, the involvement of family caregivers is fundamental in both High-Income Countries (HICs) and Low-Income Countries (LICs). The lack of formal support in LICs implies that educational interventions to support family caregivers in this region could be more complex and urgently needed than in HICs. To comprehend the existing situation and identify the gaps in LICs, using HICs as a benchmark standard and conducting a review comparing educational interventions in both regions is essential. To identify and compare the existing implementation of education for family caregivers of patients with advanced cancer in LICs and HICs. An integrative review guideline by Whittemore and Knafl was followed. Interventional studies related to education for family caregivers providing care for adult patients with cancer were included, and review articles were excluded. Data were obtained from PubMed, EBSCO, ProQuest, and ClinicalKey. The search was conducted on 18 November 2021 and updated on 9 August 2023. Data reduction, data comparison, conclusion drawing, and data verification were conducted. Out of the 11 studies included, nine were randomized controlled trials, and two were quasi-experimental studies. Among them, seven (63%) were conducted in HICs, and four (37%) were carried out in LICs. In both regions, the psychological aspect was the most commonly addressed subject in palliative care education for family caregivers. However, in LICs, no articles specifically addressed the social and spiritual aspects of family caregivers' education. Research conducted in LICs mostly involved nurses, while studies in HICs included a more diverse range of healthcare professionals. Typically, these programs required two to three sessions, with 30-60 minutes duration for 3-12 weeks. The social and spiritual aspects can be integrated into family caregivers' training programs in LICs in the near future. Nurses, as an integral part of the multidisciplinary team, are capable of contributing to the development of educational programs for family caregivers, especially in resource-limited countries where patients rely heavily on their caregivers and relatives. Support from nurses is fundamental in such contexts.

Usability of a Virtual Reality Application to Educate Family Caregivers of Children With Asthma

Virtual reality (VR) is being used to educate health professions students, however, little is known about the use of VR in the context of providing education to caregivers. After the initial development of a VR prototype, the purpose of this study was to evaluate the usability and user experience of the Asthma Academy App – an app designed to educate caregivers on how to manage a child's asthma attack. Thirty-eight doctor of nursing practice students participated in the alpha-testing. This study used a quantitative, descriptive design employing the System Usability Scale and several open-ended questions. The mean score on the SUS was 80.33 (SD 12.97) indicating high usability. The Asthma Academy App© prototype was perceived as easy to use, interactive, and user-friendly. Virtual Reality may be an innovative way to advance family caregiver education efforts related to asthma management.

Pengaruh Discharge Planning Berbasis Keluarga Terhadap Kualitas Hidup Pasien Stroke : Literatur Review

Implementing family-based discharge planning, which relies on the participation of family members, can help stroke victims feel better. The purpose of this study was to identify the effect of family-based discharge planning on the quality of life of stroke patients based on journal literature reviews. Methode uses systematic literature reviews of journals taken from research in 15 journals, which were discovered through screening results of a number of journals from Google Scholar, Cochrane, Science Direct, Pubmed, and Wile using the keywords "Discharge Planning" AND "Family" AND "Quality Of Life" AND "Stroke OR Post Stroke". Writing research journals from the 2017-2021 time frame and those that complied with inclusion and exclusion standards, in PICOTS format, both national and international journals. Results from 15 design journals used quasy experimental (33.5%), Systematic Review (13.4%), Randomized controlled (13.4%), Cross sectional survey (6.7%), Longitudinal Survey (6.7%), True Experimental (6.7%), Parallel group (13.4%), Retrospective Study (6.7%). Conclusion Discharge planning provides family caregiver education about stroke. The support of family members is very important in improving the patient's health by contributing to quality care and creating a pleasant atmosphere.

Educational intervention for family caregivers of older adults with delirium: An integrative review.

To propose educational strategies to prevent delirium in older adults. Integrative review. This review followed the methodology of Whittemore and Knafl (J Adv Nurs 52(5):546-553, 2005. 10.1111/j.1365-2648.2005.03621.x). A literature search was performed of the PubMed, CINAHL, Embase, Cochrane Library CENTRAL, and Scopus databases on 8 July 2022. Three themes of educational interventions were identified: capacity building, resource provision and enhancement of relationships, collectively termed Fa-CARE. Educational interventions improved family caregivers' knowledge about delirium, their anxiety; depression; self-efficacy; and attitudes. Among older adults, these interventions improved the duration, severity and incidence of delirium; functional abilities; and length of hospital stay. Providing education to family caregivers benefits both those caregivers and the older adults. When planning educational intervention, diverse and innovative approaches need to be considered. This study can guide family education regarding the care of older adults with delirium. Educational interventions positively impacted both family caregivers and older adults with delirium. Educational interventions provide family caregivers with resources, improve their capacity for delirium management, and enhance their relationships with older adults. This study suggests future directions in education for family caregivers of older adults with delirium. This review adhered to the EQUATOR guidelines by using the PRISMA 2020 checklist. No patient or public contribution.

Needs for Discharge Education of Family Caregivers of Pediatric Patients: An Integrative Review

Purpose: The purpose of this study was to explore needs for discharge education of family caregivers of pediatric patients through an integrated literature review.Methods: A systematic search was performed using four electronic databases (PubMed, CINAHL, Embase, and PsycINFO) guided by the Preferred Reporting Items for Systematic Reviews and Meta-Analysis. Data were extracted, categorized, and analyzed using the thematic analysis method. The quality of each study reviewed was assessed using the Mixed Methods Appraisal Tools (MMAT).Results: In total, 10 studies that were published between January 2012 and December 2021 were included. The MMAT quality scores ranged from 60% to 100%. In this review, needs for discharge education were categorized into contents, methods, and materials.Conclusion: Pediatrics patients’ families wanted to receive clear and standardized discharge education using visual materials. In addition, they wanted to receive education in a separate place, without their children present, and with sufficient time. Thus, for effective discharge education, standardized educational methods should be developed, and visual materials, such as simulations and videos, should be used.

Improving neonatal health with family-centered, early postnatal care: A quasi-experimental study in India.

Despite the global decline, neonatal mortality rates (NMR) remain high in India. Family members are often responsible for the postpartum care of neonates and mothers. Yet, low health literacy and varied beliefs can lead to poor health outcomes. Postpartum education for family caregivers, may improve the adoption of evidence-based neonatal care and health outcomes. The Care Companion Program (CCP) is a hospital-based, pre-discharge health training session where nurses teach key healthy behaviors to mothers and family members, including skills and an opportunity to practice them in the hospital. We conducted a quasi-experimental study to assess the effect of the CCP sessions on mortality outcomes among families seeking care in 28 public tertiary facilities across 4 Indian states. Neonatal mortality outcomes were reported post-discharge, collected via phone surveys at four weeks postpartum, between October 2018 to February 2020. Risk ratios (RR), adjusting for hospital-level clustering, were calculated by comparing mortality rates before and after CCP implementation. A total of 46,428 families participated in the pre-intervention group and 87,305 in the post-intervention group; 76% of families completed the phone survey. Among the 33,599 newborns born before the CCP implementation, there were 1386 deaths (NMR: 41.3 deaths per 1000 live births). After the intervention began, there were 2021 deaths out of 60,078 newborns born (crude NMR: 33.6 deaths per 1000 live births, RR = 0.82, 95% CI: 0.76, 0.87; cluster-adjusted RR = 0.82, 95% CI: 0.71, 0.94). There may be a substantial benefit to family-centered education in the early postnatal period to reduce neonatal mortality.

Case Report

Abstract Falls from wheelchairs are common, particularly in persons with a spinal cord injury. Patients who experience falls frequently incur physical and psychological damages. The underlying causes of falls vary, although one of the most important themes is associated with poor balance. Factors that contribute to ineffective balance include poor trunk and abdominal muscle strength, inability to maintain static or dynamic trunk control, diminished sensation, improper equipment usage, muscle spasms, unsafe speed of mobilization, and lack of protective straps. The literature regarding fall prevention of pediatric patients with a spinal cord injury is very limited. Guidance is needed for this vulnerable population to prevent falls from wheelchairs. Instructions for wheelchair safety must be incorporated into patient and family caregiver education. Behavioral change theory provides a framework for this work. This article is intended to close the gap by discussing the incidence of falls, suggesting the provision of teaching self-management, and introducing suggestions for developing an interdisciplinary fall prevention program.

Use of Virtual Reality in Family Caregiver Education: A Literature Review.

Foronda, Cynthia PhD, RN, CNE, CHSE, ANEF, FAAN; Lee, Jiye MSN, CPNP-AC; Santiesteban, Zaily MSN, APRN, AGPCNP-BCEditor(s): Alexander, Susan DNP, ANP-BC, ADM-BC Author Information

Qualitative assessment of family caregiver-centered neonatal education program in Karnataka, India.

Globally 2.5 million newborns die every year before they reach the age of one month; the majority of these deaths occur in low- and middle-income countries. Among other factors, inadequate knowledge and skills to take care of newborns contribute to these deaths. To fill this gap, training patients and family members on the behaviors needed to improve essential newborn care practices at home is a promising opportunity. One program that aims to do this is the Care Companion Program (CCP) which provides in-hospital, skills-based training on care of mothers and newborns to families. This study uses semi-structured interviews to understand how and why knowledge and behaviors of maternal and newborn care behaviors change (or don't change) as a result of CCP sessions and participants' perception of the impact of CCP on change. Interviews focused on knowledge and behaviors around key neonatal and newborn topics and health seeking behaviors for health complications. Forty-two in-depth interviews were conducted among families with recently-delivered babies at their homes from four districts in Karnataka, India. Respondents have a positive perception about CCP, found training useful and appreciated other family members presence during the training. CCP increased knowledge and awareness and provided critical details to key behaviors like breastfeeding. Respondents were more likely to be receptive toward details on already known topics, like hand washing before touching the baby. Awareness increased on newly learned behaviors, like skin-to-skin care, which don't conflict with cultural norms. The CCP did not influence nonrestrictive maternal diet as much, which cultural norms heavily influence. In-hospital family caregiver education programs, like CCP, can positively influence key neonatal behaviors by imparting knowledge and key skills. However, the effect is not universal across health behaviors.

The Influence of 6-Month Interdisciplinary Accompaniment on Family Caregivers' Knowledge and Self-Efficacy Regarding Diabetic Wound Care.

Diabetes mellitus (DM) is a global health issue. Diabetic wounds have become a severe health complication. Interdisciplinary education and the use of homecare have led to improvements in the health of patients with chronic disease. The family caregiver's knowledge and self-efficacy positively impact the DM patient's self-care in the physical and psychological dimensions. There is still a need for interdisciplinary education to enhance family caregivers' knowledge and self-efficacy regarding diabetic wound care. To determine the effect of 6 months of interdisciplinary education on family caregivers' knowledge and self-efficacy regarding diabetic wound care. A quantitative longitudinal study with a quasi-experimental, one-group, pretest-posttest design was conducted. Family caregivers received 6 months of interdisciplinary education regarding diabetic wound care. The Foot Care Confidence Scale (FCCS) was used to measure the family caregivers' knowledge and self-efficacy regarding diabetic wound care. The dependent samples t test and the Wilcoxon signed-rank test were used for statistical analysis. Sixteen caregivers of patients with diabetic ulcer wounds in the homecare unit participated in this intervention with a 6-month follow-up. Six months of interdisciplinary education significantly increased the family caregivers' knowledge (p = 0.001) and self-efficacy (p = 0.001). However, there was no significant correlation between self-efficacy and gender, age, education level, or duration of wound care (p = 0.91; 0.93; 0.38; 0.40, respectively). Long-term interdisciplinary education improved caregiver performance across genders, ages, education levels, and wound care experience durations. Long-term interdisciplinary education of family caregivers is recommended as one method to enhance the family support system with respect to diabetic ulcer care management. In addition, interprofessional collaboration could be performed to enhance the understanding of healthcare, especially diabetic ulcer care.

P09.05.A Caregiver café in a neuro-oncological context

Abstract Background Caregivers to patients with primary brain tumors often play a vital role in the direct care and support of the patient. Great responsibility is placed on their shoulders to manage practicalities during the cancer trajectory. Caregivers are asked to carry out procedures, report patient-related evaluations, coordinate care and treatment and deliver proper information to the healthcare providers. Hence, they tend to neglect their own physical and emotional needs as they priorities other tasks including financial issues, household and work while coping with family adjustment. Caregivers of patients with brain tumors experience a high level of burden and distress. It is shown in literature that caregiver interventions can reduce caregiver burden, distress and anxiety, and improve coping, relationships and physical functioning Aim: The aim of this study is to offer caregivers to join a caregiver café at the neuro-oncological department to 1) relax, meet and support each other, (2) be provided with information and answers to their questions, and (3) be recommended appropriate caregiver services. Material and Methods This is a user-based sequential three phase project. Applying a co-creation process with informal caregivers we first investigate their preferences, needs and considerations in relation to establishing a caregiver café. A user survey consisting of demographic characteristics and five study-specific and open-ended questions are conducted. Secondly, a project protocol with the design, content and practical planning will be outlined and presented for the patient/relative-user panel at the oncological department. After the final adjustment, a feasibility testing will take place in phase three. Results This three-phase project rest on a sequential project development, and findings from one phase will led to the detailed adjustment in the next. Due to its nature of following a participatory design we consider the results to be highly relevant to the users of health-care services. Results from phase I and II is ready to be presented in autumn 2022 including the preliminary results of the feasibility study (recruitment, adherence, safety etc). Conclusion Nurses working within neuro-oncology are e.g responsible for providing support, information and education for family caregivers. This project may inspire other nurses to carry out similar initiatives in clinical practice. Thereby we seek to strengthen the evidence on how, what and when the caregivers’ needs and concerns are best addressed with innovative solutions. Acknowledgement We like to thank the nurses at the neuro-oncology department, Rigshospitalet for their valuable input and for their participating with the user survey.