Virtual reality and neurofeedback as a supportive approach to managing cancer symptoms for patients receiving treatment: A brief report of a feasibility trial.

OBJECTIVES: Managing cancer symptoms while patients receive systemic treatment remains a challenge in oncology. The use of complementary and alternative medicine (CAM) approaches like virtual reality (VR) and neurofeedback (NF) in tandem with systemic treatment might reduce symptom burden for patients. The combination of VR + NF as a CAM intervention approach is novel and understudied, particularly as it relates to supportive cancer care. The purpose of this study is to summarize our VR + NF study protocol and share preliminary results regarding study retention (across 2 treatment sessions) and preliminary impact of VR or VR + NF on patient-reported outcomes such as anxiety and pain. METHODS: We utilized a parallel arm trial design to compare preliminary impact of VR only and VR + NF on cancer symptoms among patients who are actively receiving cancer treatment. RESULTS: Sixty-seven percent (n = 20) of participants returned to participate in a second VR session, and the rates of return were the same between the VR groups. Patients in the VR + NF group showed improvements in anxiety after both sessions, while patients in the VR only group showed significant improvements in pain and depression after both sessions. Patients in the VR + NF group showed improved pain after session 1. SIGNIFICANCE OF RESULTS: This study demonstrates that patients can be retained over multiple treatment sessions and that VR and NF remain promising treatment approaches with regard to impact on patient-reported outcomes like anxiety and pain.

Immersive virtual reality and neurofeedback for the management of cancer symptoms during treatment.

Millions of people are diagnosed with cancer each year in the USA and are living on systemic therapies designed to prolong their life. While these therapies are intended to treat the disease, most exacerbate cancer symptoms such as pain and anxiety. Oncologists and other healthcare providers are now challenged to deliver adjunctive therapies designed to improve quality of life of patients while they undergo cancer treatment, including minimizing already disruptive symptoms such as cancer pain and anxiety. Complementary and alternative medicines such as immersive virtual reality (VR) and neurofeedback (NF) are novel approaches to the management of cancer symptoms. While the evidence for combining VR and NF, specifically for management of cancer pain, while patients undergo systemic therapies, is still emerging; our preliminary findings suggest this treatment modality might offer relief of cancer symptoms. This paper briefly highlights the clinical need for supportive therapies such as VR and NF in the oncological setting and summarizes innovative research in this area.

Feasibility and acceptability of an online mental health intervention for pregnant women and their partners: a mixed method study with a pilot randomized control trial.

BACKGROUND: Untreated perinatal mood and anxiety disorders (PMAD) have short- and long-term health and social consequences; online cognitive behavioral therapy (CBT) interventions can reduce symptoms. Despite partner support being protective online interventions rarely target couples. This study builds on research on an existing CBT-based intervention, the Mothers and Babies Online Course (eMB), by testing its feasibility with prenatal couples. METHODS: We conducted a pilot, randomized, controlled feasibility trial using a 1:1 parallel design. To be eligible, participant dyads were pregnant people (between 13-30 weeks gestation and with a score of 10 or greater on either the GAD-7 or PHQ-9 scale indicating elevated symptoms of anxiety or depression) and their cohabitating partners, living in Missouri, with access to the internet; both in the dyad consented to participate. Recruitment occurred via Facebook ads, flyers, and a snowball approach. The intervention group received eMB, and the control group received a list of community resources. We examined retention and adherence data extracted from eMB analytics and study databases. All participants were given depression and anxiety scales at baseline, 4 and 8 weeks to test preliminary efficacy; satisfaction and acceptability were measured at trial end (i.e., eight weeks) and via interview. RESULTS: There were 441 people who responded to recruitment materials, 74 pregnant people were screened; 19 partners did not complete enrolment, and 25 dyads were ineligible. There were 15 dyads per group (N = 30) who enrolled; all completed the study. The survey response rate was 90% but partners required nearly twice the number of reminders. No participant completed all lessons. Mean depression and anxiety scores dropped over time for dyads in control (M = -1.99, -1.53) and intervention (M = -4.80, -1.99). Intervention pregnant people's anxiety significantly decreased (M = -4.05; 95% CI [0.82, 7.27]) at time two compared to control. Twelve pregnant people and four partners participated in post-intervention interviews and suggested improvements for eMB. CONCLUSION: Online dyadic interventions can potentially reduce PMAD symptoms. However, to feasibly study eMB with couples, strategies to increase program adherence are necessary. Tailoring interventions to overtly include partners may be advantageous. TRIAL REGISTRATION: ClinicalTrials.gov NCT05867680, 19/05/2023.

Sense making in the wake of familial death: "I continue to work through those feelings".

Sense making is especially common in bereavement when a death challenges an individual's existing worldview. Thus, it is often discussed in the context of statistically atypical deaths, such as the death of a child or death by suicide, that are apt to create a crisis of meaning. Less understood is the process of sense making following more statistically normative deaths, such as those that occur in old age following prolonged illness. In this descriptive phenomenological study, researchers analyzed qualitative interviews and digital narratives created by six individuals who had experienced the death of an older family member with dementia, seeking to identify the essential nature of sense making during bereavement following so-called "normal" losses. Three themes (memorializing the whole person, reflecting on the caregiving experience, and emotional sense making) were identified, shedding light on this specific meaning making process among individuals representing a large and growing segment of the population.

"Everybody Needs to Talk About Their Child": A Descriptive Phenomenological Study of Bereaved Parents' Experiences in Digital Storytelling.

Digital Storytelling (DS) is a narrative intervention that supports participants' ability to find meaning in their life experiences - in this case, bereavement after child death. Thirteen (N = 13) bereaved parents engaged in a DS workshop in which they created a story about the death of their child. Using a descriptive phenomenological approach, researchers explored participants' experience with child death via their completed digital stories. Results highlight connection as a pathway to meaning making for bereaved parents who participate in DS, specifically in regard to connection with other bereaved parents and connection with their deceased child via telling their story.

Digital storytelling: Narrating meaning in bereavement.

Individuals who cannot make sense of a significant death are more likely to experience bereavement complications than those who are able to reconcile their loss with existing or newly-developed ways of understanding the world. Digital Storytelling, a multi-media narrative technique, has been identified as a potential facilitator of meaning-making processes. In this secondary qualitative analysis, researchers described the meaning-making processes evident in bereaved individuals' (N = 14) personally-created digital stories, identifying sense making, benefit finding, continuing bonds, shifting identity, and addressing unfinished business. Findings support prior research and enrich emerging understandings of arts-based interventions as tools to facilitate and communicate meaning-making processes.

Digital Storytelling as an Intervention for Bereaved Family Members.

Fourteen (N = 14) bereaved family members participated in an exploratory study of Digital Storytelling as a bereavement intervention. The primary purpose of this study was to examine the feasibility of this approach and to qualitatively assess potential impacts. Qualitative data revealed that for some, participation in Digital Storytelling facilitated growth and meaning-making. Themes from the data also revealed that participation in Digital Storytelling affected participants in these ways: (a) the writing and verbalization of the script helped participants organize their thoughts and emotions about the loss, (b) having the space to share with a collective group encouraged confidence in their ability to discuss their feelings with others, and (c) the final product served as a source of closure for participants. Although this was a small exploratory study, results were promising and suggest the clinical applicability of Digital Storytelling as a tool for facilitating meaning-making among bereaved family members.

Digital Storytelling for Bereaved Individuals in a Virtual Setting.

An emerging body literature exists highlighting the use of Digital Storytelling as an educational, and/or therapeutic intervention. Authors of this manuscript have studied Digital Storytelling as a narrative bereavement intervention designed to help individuals make meaning of adverse life events, like the death of a family member. Until recently, Digital Storytelling is typically delivered in person. The purpose of this article is to describe the steps to implementing Digital Storytelling as a bereavement intervention in a completely virtual setting, using Zoom technology. Best practices and lessons learned for the virtual delivery of Digital Storytelling are provided.

Factors influencing engagement in an online support group for family caregivers of individuals with advanced cancer.

Objective: To explore factors that influenced engagement in an online support group (OSG) for family caregivers of hospice patients with cancer.Design: Secondary qualitative data analysis.Sample: 58 family caregivers of hospice patients with advanced cancer.Methods: Template analysis of individual family caregiver interviews.Findings: Emotional isolation and caregiving downtime positively influenced engagement, while reluctance to share personal information, a short timeframe of participation in the OSG, and caregiving commitments were negatively influential. While the group facilitation and secure privacy settings of the OSG were viewed positively, reactions to the OSG platform and group tone were mixed. Information on pain and the dying process was found to be particularly engaging.Practice implications: Providers offering OSGs for family caregivers should maximize factors that promote meaningful member engagement, responding to changes in activity and tone over time.

Exploring Lived Experiences of Chronic Pain Through Photo-Elicitation and Social Networking.

OBJECTIVE: To understand how patients' use of photo-elicitation and online social networks (Facebook) enhances their understanding of what it means to live with pain. DESIGN: Qualitative substudy of the intervention arm of a randomized trial. SETTING/SUBJECTS: Primary care patients living with pain drawn from nine family practices with at least two pain visits in the last six months. METHODS: The private Facebook group was co-facilitated by a moderator and a patient-investigator who lives with chronic pain. Patients were asked to share photos that elicit their lived experience with chronic pain, and facilitators guided participants in ongoing discussion about these photos, and thus the life with pain. Facebook discussions were analyzed via Dedoose (a qualitative analysis software) using thematic analysis. RESULTS: Discussions of photos elicited three overarching themes regarding patients' lived experience with chronic pain: 1) patients' redefined pain identity; 2) pain interference with enjoyment of life and activities; and 3) patients' diminished ability to function. CONCLUSIONS: Photo-elicitation is an innovative way to shed light on patients' lived experience with chronic pain. Despite some technical challenges, Facebook support groups utilizing photo-elicitation can provide a readily available platform that can facilitate interchange of patient experiences and might help patients communicate with their providers.

Digital Storytelling: Families' Search for Meaning after Child Death.

Bereaved families that collectively make meaning of their grief experiences often function better than those that do not, yet most social work bereavement interventions target individuals rather than family units. In this article, authors describe an innovative social work intervention that employs digital storytelling. This is a narrative technique that combines photography, music, and spoken word to help families bereaved by child death make meaning of their loss and envision a future without their deceased child.

Virtual Reality and Neurofeedback for Management of Cancer Symptoms: A Feasibility Pilot.

Background: Evidence suggests the usefulness of complementary and alternative medicine approaches, like neurofeedback and virtual reality, for the management of cancer-related pain and mood. It is not well-understood whether neurofeedback delivered through virtual reality is feasible and acceptable to patients actively undergoing cancer treatment. Objective: The purpose of this study was to explore the feasibility and acceptability of a nature-based virtual reality combined with neurofeedback as a non-pharmacologic strategy for managing cancer-related pain and anxiety. Methods: This study utilized a mixed-methods approach. Participants included 15 cancer patients undergoing treatment. Patients engaged in a 22-minute nature-based virtual reality experience, wearing a virtual reality headset with a Brainlink headband measuring EEG activity. Participants were asked to complete the Edmonton Symptom Assessment System revised version (ESAS-r) before (T1) and after (T3) the experience to measure pain and anxiety. They were asked their level of pain midway through the experience (T2) and completed a follow-up interview afterward. Results: This study revealed feasible delivery of a virtual reality intervention combined with neurofeedback for patients seeking cancer treatment. All participants (100%) completed the intervention experience. Patients report this is an acceptable approach to managing cancer-related pain and anxiety. Comparisons between patients' pain scores at T1, T2, and T3 reveal statistically significant reductions in pain (p .001). Patients also report decreased depression and anxiety. Conclusion: This is the first study examining virtual reality combined with neurofeedback as a non-pharmacologic intervention for managing cancer symptoms during treatment. The study reveals it is a promising for managing cancer-symptoms.

A Pilot Study of An Intervention to Increase Family Member Involvement in Nursing Home Care Plan Meetings.

BACKGROUND AND OBJECTIVES: Many family members struggle to negotiate their aging relative's care with nursing home staff, potentially leading to depression and other negative outcomes for residents' families. This pilot study tested an intervention designed to empower residents' family members to attend and participate in nursing home care plan meetings. RESEARCH DESIGN AND METHODS: We conducted a small, randomized, controlled trial of the Families Involved in Nursing home Decision-making (FIND) intervention, which used web conferencing to facilitate family participation in care plan meetings. RESULTS: Overall, FIND was feasible and acceptable. Family members who received the FIND intervention were more likely to experience decreased depressive symptoms than those who did not. DISCUSSION AND IMPLICATIONS: FIND is a promising approach to reduce depression among family members of nursing home residents. Findings support the need for a follow-up clinical trial.

Family Caregiver Problems in Outpatient Palliative Oncology.

Background: Understanding challenges of family caregivers within specific palliative care contexts is needed. Objective: To describe the challenges of family caregivers of patients with cancer who receive outpatient palliative care. Methods: We summarized the most common and most challenging problems for 80 family caregivers of cancer patients receiving outpatient palliative care in the midwestern United States. Results: Caregiver worry and difficulty managing side effects or symptoms other than pain, constipation, and shortness of breath were most common. "Financial concerns" was cited most as a "top 3" problem. Almost half of caregivers reported "other" problems, including family members, patient physical function, care coordination, and patient emotional state. Conclusions: The most common and most challenging problems of family caregivers of cancer patients receiving outpatient palliative care may differ from those experienced in other serious illness care contexts. Comparative studies on caregiver problems across the cancer care continuum can help develop and refine interventions.

Comfort Needs of Cancer Family Caregivers in Outpatient Palliative Care.

Rapid expansion of outpatient palliative care has been fueled by the growing number of people living with cancer and other chronic illnesses whose symptoms are largely managed in the community rather than inpatient settings. Nurses and other palliative care professionals support seriously ill patients and their families, yet little research has specifically examined the needs of cancer family caregivers receiving services from outpatient palliative care teams. To address this gap in the knowledge base, researchers conducted a reflective thematic analysis of qualitative interviews conducted with 39 family caregivers, using Comfort Theory as a theoretical guide. Seven themes describing caregivers' comfort needs were identified, including the need to understand, need for self-efficacy, need to derive meaning, need for informal support, need for formal support, need for resources, and need for self-care. Findings have clear implications for palliative nursing, as they directly address cancer family caregivers' needs in 5 of the 8 domains of care delineated by the National Consensus Project for Quality Palliative Care's Clinical Practice Guidelines. Comprehensive, holistic nursing assessment is suggested to identify family caregivers' needs and plan for delivery of evidence-based interventions shown to decrease burden and improve quality of life.

Perceived Benefits and Burdens of Participation for Caregivers of Cancer Patients in Hospice Clinical Trials: A Pilot Study.

CONTEXT: Hospice is a service for those with a life expectancy of six months or less. Family caregivers suffer from depression and anxiety as they care for their loved one until they die. Little is known about how research participants decide to consent to participate in clinical trials in the hospice setting. OBJECTIVES: This pilot study sought to answer two research questions: 1) In what way do demographic characteristics, mental health, and perceived caregiving experience impact the decision by caregivers to participate in hospice clinical trials? 2) In what ways do the perceived physical, psychological, economic, familial, and social dimensions of caregivers' lives influence their decision to participate in hospice clinical trials? METHODS: The characteristics and stated reasons for consent of hospice caregivers participating in a clinical trial were compared with individuals who refused clinical trial consent and only consented to this pilot study. Demographic, mental health, and perceptions of caregiving experience were measured as influencers to the consent decision. Recruitment calls were recorded and coded using framework analysis to identify perceived benefits and burdens impacting the decision to consent to the clinical trial. RESULTS: Overall, trial participants were more often adult children to the patient (55% vs. 21%, P = 0.005), younger (56 vs. 63 years, P = 0.04), and employed (47% vs. 24%, P = 0.02) as compared with those who did not consent to participate in the trial. Reported levels of depression, anxiety, and quality of life were not significantly different between those who chose to participate in the clinical trial and those who participated only in this pilot study; however, caregiver burden was higher for those consenting to the clinical trial (4.05 vs. 7.16, P < 0.0001). Perceived benefits expressed by both groups were largely psychological as participants felt positive about contributing to science. Burdens expressed by both groups were predominately physical as they related to hesitation to participate in the intervention because of technology or the burdens of caregiving. CONCLUSION: The benefits and burdens model for clinical trial participation is applicable to the caregiver experience in the hospice setting. Understanding the perceptions and dimensions of benefits and burdens to potential study participants is critical to not only the intervention design but also the tailoring of recruitment contacts and informed consent process.

Caregiver Speaks Study Protocol: A Technologically-Mediated Storytelling Intervention for Hospice Family Caregivers of Persons Living With Dementia.

OBJECTIVE: We present the protocol of a study aiming to examine the efficacy of a technologically-mediated storytelling intervention called Caregiver Speaks in reducing distress and grief intensity experienced by active and bereaved hospice family caregivers of persons living with dementia (PLWD). DESIGN: The study is a mixed-method, 2-group, randomized controlled trial. SETTING: This study takes place in 5 hospice agencies in the Midwest and Northeastern United States. PARTICIPANTS: Participants include hospice family caregivers of PLWD. INTERVENTION: Participants are randomized to usual hospice care or the intervention group. In the Caregiver Speaks intervention, caregivers engage in photo-elicitation storytelling (sharing photos that capture their thoughts, feelings, and reactions to caregiving and bereavement) via a privately facilitated Facebook group. This intervention will longitudinally follow caregivers from active caregiving into bereavement. The usual care group continues to receive hospice care but does not participate in the online group. OUTCOMES MEASURED: We anticipate enrolling 468 participants. Our primary outcomes of interest are participant depression and anxiety, which are measured by the Patient Health Questionnaire (PHQ-9) and the Generalized Anxiety Disorder screening (GAD-7). Our secondary outcomes of interest are participants' perceived social support, measured by the Perceived Social Support for Caregiving (PSSC) scale, and grief intensity, which is measured by the Texas Revised Inventory of Grief Present Subscale (TRIG-Present).

Preliminary Results of Caregiver Speaks: A Storytelling Intervention for Bereaved Family Caregivers.

When bereaved cancer caregivers have the opportunity to tell stories about their caregiving and bereavement journey, they are better able to make meaning of these experiences. Creating a space where they can share stories with other bereaved caregivers increases social validation, facilitates the meaning-making process, and reduces distress and risk for complicated grief. This study explored the feasibility and acceptability of an innovative storytelling intervention for bereaved family caregivers of cancer patients. Twenty-one participants engaged in the intervention, and eleven were interviewed about their experience. Results indicated study feasibility and intervention acceptability. Suggestions for future intervention were also provided.

Online social support groups for informal caregivers of hospice patients with cancer.

PURPOSE: Social support is an important factor in reducing caregiver burden, however, accessing social support via traditional means is often challenging for family caregivers of hospice patients. Online support groups may offer an effective solution. The present study sought to understand dynamics of online social support among family and other informal (e.g., friends) caregivers of hospice cancer patients in an online social support group. The primary aim of the study was to identify types of online social support and support-seeking behaviors, with a secondary aim to understand informal hospice caregivers' preferences for social support. METHOD: Data used in this study were collected as part of a federally funded randomized clinical trial of an informal hospice cancer caregiver support intervention. Findings are based on directed and conventional content analysis of support group members' posts and comments-including text and images-and a sample of caregivers' exit interviews. RESULTS: Analyses demonstrated that the majority of online support provided by group members was emotional support, followed by companionship support, appraisal support, and informational support. Instrumental support was rarely provided. Support was primarily elicited in an indirect manner through self-disclosure and patient updates, with few overt requests for support. CONCLUSIONS: Findings suggest online social support groups can be a valuable resource for informal caregivers who are in need of emotional support and lack the ability to access face-to-face support groups. Clinical implications of this research to healthcare systems regarding the importance of incorporating nurses and other medical professionals as co-facilitators of online support groups are discussed.