Expressive Arts Interventions to Improve Psychosocial Well-Being in Caregivers: A Systematic Review.

CONTEXT: Over 43 million caregivers provide care and support in the United States. Increased stress and burden may contribute to poor psychosocial well-being. Recently, there has been an emergence of art-based interventions to improve well-being among care receivers and caregivers. A synthesis of this literature evaluating expressive arts interventions (EAIs) with caregivers is needed. OBJECTIVES: Identify the nature and impact of EAIs for caregivers and outline directions for future research. METHODS: Systematic searches were conducted in PubMed/MEDLINE, CINAHL, PsychINFO, and Web of Science for relevant studies between 2001 and 2022. Inclusion criteria included EAI addressing psychosocial well-being of caregivers, quantitative and mixed methods studies, and written in English. RESULTS: Twenty-seven studies were included (1359 participants). There was a diverse global representation of countries (n = 14). Twelve studies were randomized controlled trials. The majority (n = 11) were conducted with dementia/alzheimers caregivers and 41% (n = 11) were delivered to the caregiver/receiver dyad. Fifty-nine percent of the EAIs were music-based, 22% were visual arts, and 10% were writing. Intervention length varied from a single one-hour session to biweekly for 10-months; eight lasted two-weeks. Overall, stress improved in 80% of the studies, anxiety in 69%, caregiver burden in 57%, and depressive symptoms in 31%. CONCLUSION: Caregivers are essential to the care of people with medically complex and life-limiting conditions. EAIs hold the potential to improve psychosocial outcomes for caregivers, are used globally, and can be culturally tailored. Future research should examine intervention duration and intensity, measures to address additional dimensions of psychsocial well-being, and implementation in additional caregiver populations.

Wonders & Worries: A randomized clinical trial of a psychosocial intervention for children who have a parent with cancer.

OBJECTIVE: The aim of this study was to test the effectiveness of Wonders & Worries, a psychosocial intervention for children who have a parent with cancer. Primary goals were to improve family quality of life, functioning and communication skills as reported by parent and child, enhance children's emotional/behavioral adjustment and parenting efficacy, while decreasing parenting concerns and ill parents' depression and anxiety. METHODS: Sixty families were recruited from a community based non-profit agency. Parents diagnosed with Stage I-III cancer and their children ages 5-14 years were enrolled and randomized into intervention (n = 32) or wait-list control groups (n = 28). Families received 2 parent consults, six weekly 1-h individual child sessions, and 1 treatment center tour. The intervention was comprised of an age-appropriate understanding of cancer and expression of feelings, coping skills to ease feelings related to parent's cancer and enhanced ability to communicate about the disease. Controls received parent consult and access to W & W resources. Data were obtained from standardized measures at baseline; 6 and 10 weeks follow up. RESULTS: Intervention group significantly improved on parenting concerns, parenting self-efficacy, and family quality of life. Children in the intervention group had significantly lower emotional and behavioral problems and worries related to cancer compared to controls. The intervention failed to significantly affect ill parent's anxiety, depressed mood, family functioning and child's anxiety. CONCLUSIONS: The Wonders & Worries intervention promoted positive adaptation for ill parents and their children. This intervention is promising enough to warrant further refinement and testing with larger, more diverse samples.

Development and evaluation of the Good Grief program for young people bereaved by familial cancer.

BACKGROUND: Adolescents and young adults (AYAs) bereaved by the death of a parent or sibling from cancer report unique psychosocial needs and can have difficulty adjusting to their loss. Unaddressed, this can result in poor long-term bereavement outcomes. This paper describes the development and evaluation of Good Grief - a 3-day camp-based program focused on meeting coping, social support, and respite needs of AYAs bereaved by familial cancer. METHODS: One hundred and nine Australian AYAs (68% female; age: 12-25 years, M = 16.63) participated in the evaluation. Grief intensity (Texas Revised Inventory of Grief), meaning-making (Grief and Meaning Reconstruction Inventory), trauma coping (Perceived Ability to Cope with Trauma Scale) and unmet needs (Bereaved Cancer Needs Instrument) measures were administered pre-program and 3-months post-program. Acceptability was measured after each session and at the program's conclusion. Appropriateness was measured at 3-month follow-up. Thirteen participants were interviewed three months post-program on their perceptions of the program. RESULTS: Participants reported high program satisfaction, engagement with psychosocial sessions, and enjoyment of recreational activities. Significant improvements were observed in trauma coping abilities and reductions in unmet needs for managing emotions, social support, respite, future planning, and accessing information and support domains. No change was evident in grief intensity or meaning-making as measured quantitatively. Interviews supported these quantitative findings but also identified evidence of personal growth, a component of meaning-making. CONCLUSIONS: Good Grief is a highly acceptable and beneficial intervention that addresses the unique needs of AYAs bereaved by familial cancer.

Importance of Community Impact as the Fourth Academic Mission: A Qualitative Study.

Most US medical schools have 3 primary missions: education, research, and clinical service. Recently there have been calls for a fourth primary mission focused on improving health in their surrounding communities. To date, few medical schools have done so. To identify factors supporting and challenges to establishing a sustainable community impact mission, the authors conducted semi-structured key informant interviews with the dean, associate deans, departments chairs, and institute and center directors at a new US medical school that established a fourth "community impact" mission at its conception. Interviewees believed that it was appropriate for a community-focused tax-supported medical school to embrace community impact as a fourth mission to enhance community health outside of its hospitals and clinics. Many also felt that community impact should be an overriding framework for activities in the 3 primary missions. Achieving community impact would require creating a "learning health community" via partnerships with community organizations and linking faculty effort and funding to specific and valid measures of community health improvement. Sustainable funding would require core school funds and a broad portfolio of extramural funding. Faculty promotions with community impact as a focus would need explicit, achievable, and unique milestones. Interviewees made specific suggestions on the support and structure needed to launch and sustain this fourth mission. Establishing a fourth mission of community impact can extend medical schools' influence beyond typical health care venues to enhance the health of their communities and their residents. Doing so requires rethinking organizational structures, support, and measures of success.

Social work leadership in a medical school: A coordinated, compassionate COVID-19 response.

The COVID-19 pandemic has exposed the systemic inequities in our health care system and society has called for actions to meet the clinical, psychosocial and educational needs in health care settings and communities. In this paper we describe how an organized Department of Health Social Work in a medical school played a unique role in responding to the challenges of a pandemic with community, clinical, and educational initiatives that were integral to our community's health.

Spiritual assessment and spiritual care offerings as a standard of care in pediatric oncology: A recommendation informed by a systematic review of the literature.

Children with cancer and their families experience shifts in spiritual wellness from diagnosis through treatment and survivorship or bereavement. An interdisciplinary team conducted a systematic review of quantitative and qualitative research on spiritual assessments, interventions, and outcomes in childhood cancer following PRISMA guidelines using a PROSPERO registered protocol. Thirty-nine well-designed studies were included in the final analysis. The findings from this systematic review indicate the need for early spiritual assessment with offering of continued support for the spiritual functioning of children with cancer and their families as a standard of care.

Supporting Parent Caregivers of Children with Life-Limiting Illness.

The well-being of parents is essential to the well-being of children with life-limiting illness. Parents are vulnerable to a range of negative financial, physical, and psychosocial issues due to caregiving tasks and other stressors related to the illness of their child. Pediatric palliative care practitioners provide good care to children by supporting their parents in decision-making and difficult conversations, by managing pain and other symptoms in the ill child, and by addressing parent and family needs for care coordination, respite, bereavement, and social and emotional support. No matter the design or setting of a pediatric palliative care team, practitioners can seek to provide for parent needs by referral or intervention by the care team.

Assessing the Needs of Parents of Children Diagnosed With Cancer in China: A Psychometric Study Developing a Needs Assessment Tool.

The psychosocial well-being of parents remains integral to the treatment and recovery of children diagnosed with cancer. However, limited research addresses the unique needs of this population. To better understand the supportive care needs of parents of children with cancer, this study tested the reliability and stability of the factorial structure of a revised version of the Cancer Patient Needs Questionnaire (rCPNQ) with Chinese parents of children who have cancer. Analysis of the generalizability of the rCPNQ with this population was determined through principle components analysis with varimax rotation. Reliability coefficient and split sample analyses were performed to determine reliability and stability of the resulting factors. The principal components analysis resulted in a 6-dimension, 8-factor, 29-item survey. Each of the factors had Cronbach's α ≥ .74, indicating satisfactory internal consistency and reliability of the survey with the Chinese population. Similar loadings on splitting of the samples reflects the stability of the factors. Study results provided a preliminary understanding of the needs of Chinese parents of children with cancer and demonstrated that the rCPNQ offers a reliable measure for nurses and other health care providers to partner with Chinese parents throughout their children's treatment and survivorship to determine areas for support.

Advancing Hospice and Palliative Care Social Work Leadership in Interprofessional Education and Practice.

The importance of interprofessional collaboration in achieving high quality outcomes, improving patient quality of life, and decreasing costs has been growing significantly in health care. Palliative care has been viewed as an exemplary model of interprofessional care delivery, yet best practices in both interprofessional education (IPE) and interprofessional practice (IPP) in the field are still developing. So, too, is the leadership of hospice and palliative care social workers within IPE and IPP. Generating evidence regarding best practices that can prepare social work professionals for collaborative practice is essential. Lessons learned from practice experiences of social workers working in hospice and palliative care can inform educational efforts of all professionals. The emergence of interprofessional education and competencies is a development that is relevant to social work practice in this field. Opportunities for hospice and palliative social workers to demonstrate leadership in IPE and IPP are presented in this article.

Hanging by a thread: exploring the features of nonresponse in an online young adult cancer survivorship support community.

PURPOSE: Finding helpful information can be challenging for young adult (YA) cancer survivors; thus, it is critical to examine features of online posts that successfully solicit responses and assess how these differ from posts that do not solicit responses. METHODS: Using posts from an online YA cancer support community, we analyzed initial posts that did and did not receive replies utilizing Linguistic Inquiry Word Count (LIWC). RESULTS: Independent t tests revealed significant differences between the sets of posts regarding content, emotions, cognitive processes, pronoun use, and linguistic complexity. More specifically, posts with replies contained fewer words per sentence, had more first-person pronouns, had more expressions of negative emotions, and contained more present tense and past tense verbs. CONCLUSIONS: The findings of this study can help improve peer-exchanged support in online communities so that YA cancer survivors can more effectively receive digital support. This research also provides communication researchers, health educators, and care providers a lens for understanding the YA cancer survivorship experience. IMPLICATIONS FOR CANCER SURVIVORS: This research helps survivors be strategic in how they use online forums to seek advice and support. More complete understanding of what kinds of prompts produce responses allows those in need to craft messages in ways that are most likely to elicit support from fellow cancer survivors. These implications for message design extend beyond blogging and can be applicable for text message and email exchanges between cancer patients and their care providers.

Social Work Assessment Notes: A Comprehensive Outcomes-Based Hospice Documentation System.

This article describes the development of an integrated psychosocial patient and caregiver assessment and plan of care for hospice social work documentation. A team of hospice social workers developed the Social Work Assessment Notes as a quality improvement project in collaboration with the information technology department. Using the Social Work Assessment Tool as an organizing framework, this comprehensive hospice social work documentation system is designed to integrate assessment, planning, and outcomes measurement. The system was developed to guide the assessment of patients' and caregivers' needs related to end-of-life psychosocial issues, to facilitate collaborative care plan development, and to measure patient- and family-centered outcomes. Goals established with the patient and the caregiver are documented in the plan of care and become the foundation for patient-centered, strengths-based interventions. Likert scales are used to assign numerical severity levels for identified issues and progress made toward goals and to track the outcome of social work interventions across nine psychosocial constructs. The documentation system was developed for use in an electronic health record but can be used for paper charting. Future plans include automated aggregate outcomes measurement to identify the most effective interventions and best practices in end-of-life care.

Adolescents and young adults with life-threatening illness: special considerations, transitions in care, and the role of pediatric palliative care.

This article will cover the special considerations, challenges, and opportunities presented by caring for adolescents and young adults with life-threatening illnesses when the possibility of transition to an adult care setting arises.

The duty of the physician to care for the family in pediatric palliative care: context, communication, and caring.

Pediatric palliative care physicians have an ethical duty to care for the families of children with life-threatening conditions through their illness and bereavement. This duty is predicated on 2 important factors: (1) best interest of the child and (2) nonabandonment. Children exist in the context of a family and therefore excellent care for the child must include attention to the needs of the family, including siblings. The principle of nonabandonment is an important one in pediatric palliative care, as many families report being well cared for during their child's treatment, but feel as if the physicians and team members suddenly disappear after the death of the child. Family-centered care requires frequent, kind, and accurate communication with parents that leads to shared decision-making during treatment, care of parents and siblings during end-of-life, and assistance to the family in bereavement after death. Despite the challenges to this comprehensive care, physicians can support and be supported by their transdisciplinary palliative care team members in providing compassionate, ethical, and holistic care to the entire family when a child is ill.

Understanding the lived experience of Latino adolescent and young adult survivors of childhood cancer.

PURPOSE: The purpose of this study was to investigate the experience of surviving cancer for Latino adolescents and young adult (AYA) survivors of pediatric cancer. METHODS: Using a phenomenological approach, this study focused on the experience of cancer survivorship through in-depth interviews with 14 Latino AYA survivors (16-29 years) diagnosed as young children (0-15 years) and at least 1 year post-treatment RESULTS: Four essential themes about the Latino AYA experience as childhood cancer survivors emerged from analysis: borrowed strength of family and hospital staff; sustained positive attitude; perceived vulnerability; branded a cancer survivor. According to these participants, the lived experience of surviving cancer was predominately positive. These emerging adults were able to focus on the positive lessons learned from their cancer experience such as the importance of personal relationships and an optimistic outlook on life. Yet, it was clear that long after these survivors had been labeled "cured" by the medical team, cancer continued to be a large part of their existence. CONCLUSIONS: The results indicate that these emerging adults faced their cancer experience with optimism, leaned on relationships with family and health care professionals, and demonstrated resilience through their cancer treatment and beyond. IMPLICATIONS FOR CANCER SURVIVORS: This unique description of Latino survivors' experiences demonstrates that they simultaneously face uncertainty and identify positive influences of the cancer experience in particular unwavering familial support. These findings provide opportunities for health care providers to better understand this rapidly growing population and to create culturally resonant programs that can promote their long-term health and well being.

From the Euthanasia Society to physician orders for life-sustaining treatment: end-of-life care in the United States.

Advances in medical care and increasing prevalence of noncommunicable illnesses such as cardiovascular disease and cancer had raised concerns about respecting the patients' dying wishes as early as 1938, when the Euthanasia Society of America was formed. Many high-profile cases and landmark court decisions later, there are now several ways in which different states regulate the patients' end-of-life wishes. How these laws evolved, how seminal cases and medical and ethical advances helped shape the current state of end-of-life legislation, and how patients-especially those with cancer-began adopting various forms of advance directives will be the topic of this article.