Spirituality is among the resources that many turn to as they deal with a diagnosis of advanced cancer. Researchers have made much progress in exploring and understanding spirituality's complex and multifaceted role in the midst of metastatic disease. As a result, spirituality is seen as an important aspect of a holistic and respectful approach to clinical care for patients and their loved ones. In this article, we provide a systematic review of the literature related to the interface between spirituality and metastatic cancer. We included articles published from January 2013 to June 2014. Twenty-two articles were reviewed, consisting of clinical intervention trials, association studies, surveys, qualitative studies, and review articles. The articles discussed efforts to improve patients' spiritual well-being, with relevant measurement scales; the associations of spirituality and end of life treatment practices; and efforts to better understand and meet the spiritual needs of patients and caregivers.
Research continues to establish the importance of spirituality for many persons with medical illnesses. This paper describes a pilot study titled, "Hear My Voice," designed to provide an opportunity for persons with progressive neurologic illnesses, including brain tumors and other neurodegenerative diseases, to review and discuss their spirituality with a board-certified chaplain, and to prepare a spiritual legacy document (SLD). First, we provide background information that underscores the importance of such a project for this patient population that is particularly vulnerable to cognitive impairment and communication difficulties. Second, we provide detailed methodology, including the semi-structured interview format used, the development of the SLD, and an overview of responses from participants and investigators. We also describe the quantitative and qualitative approaches to analysis taken with the aim of developing scientific validation in support of the Hear My Voice project.
Multiple types of interventions are available for T2DM management in patients with LEP. Multicomponent interventions delivered face-to-face seem most effective for glycemic control. More research is needed to better understand other aspects of multicomponent interventions that are critical for improving important outcomes among patients with T2DM and LEP.
Pregnancy and early childhood pose unique sensitivity to stressors such as economic instability, poor mental health, and social inequities all of which have been magnified by the COVID-19 pandemic. In absence of protective buffers, prolonged exposure to excessive, early adversity can lead to poor health outcomes with significant impact lasting beyond the childhood years. Helping Us Grow Stronger (HUGS/Abrazos) is a community-based program, designed and launched at the time of the COVID-19 surge in the Spring of 2020, that combines emergency relief, patient navigation, and direct behavioral health support to foster family resilience and mitigate the negative impacts of COVID-related toxic stress on pregnant women and families with children under age 6. Through a targeted referral process, community health workers provide resource navigation for social needs, and a social worker provides behavioral health support. The use of innovative tools such as a centralized resource repository, community health workers with specialized knowledge in this age range, and a direct referral system seeks to assist in streamlining communication and ensuring delivery of quality care. We aim to serve over 300 families within the 1st year. The HUGS/Abrazos program aims to fill an important void by providing the necessary tools and interventions to support pregnant women and young families impacted by adversity exacerbated by the COVID-19 pandemic.
Objective:This pilot study was designed to describe changes in spiritual well-being (SWB), spiritual coping, and quality of life (QOL) in patients with brain cancer or other neurodegenerative diseases participating in a chaplain-led spiritual life review interview and development of a spiritual legacy document (SLD).Methods:Eligible participants were enrolled and completed baseline questionnaires. They were interviewed by a board-certified chaplain about spiritual influences, beliefs, practices, values, and spiritual struggles. An SLD was prepared for each participant, and one month follow-up questionnaires were completed. Two cases are summarized, and spiritual development themes are illustrated within a spiritual development framework.Results:A total of 27 patients completed baseline questionnaires and the interview; 24 completed the SLD, and 15 completed the follow-up questionnaire. Increases in SWB, religious coping, and QOL were detected. The majority maintained the highest (best) scores of negative religious coping, demonstrating minimal spiritual struggle.Conclusions:Despite the challenges of brain cancers and other neurodegenerative diseases, participants demonstrated improvements in SWB, positive religious coping, and QOL. Patient comments indicate that benefit is related to the opportunity to reflect on and integrate spiritual experiences and to preserve them for others. Research with a larger, more diverse sample is needed, as well as clinical applications for those too vulnerable to participate in longitudinal follow-up.
Background
Although paternal involvement in the perinatal period is associated with benefits for maternal-child health and reduced obesity risk, fathers are seldom included in perinatal or obesity prevention efforts. Engaging community leaders and fathers as stakeholders in intervention development is a critical step in designing a father-inclusive intervention that is efficacious and responsive to their needs.
Methods
We conducted a structured engagement study, including community stakeholder engagement and qualitative interviews with new fathers, to inform the development of a prospective randomized controlled trial that includes mothers and fathers as equal partners in infant obesity prevention. We interpreted stakeholder feedback through the Consolidated Framework for Implementation Research (CFIR) framework.
Results
Between September 2019 and April 2020, we held a Community Engagement meeting, formed a Community Advisory Board, and conducted 16 qualitative interviews with new fathers. Stakeholder engagement revealed insights across CFIR domains including intervention characteristics (relative advantage, complexity, design quality & packaging), outer setting factors (cosmopolitanism and culture), individual characteristics (including self-efficacy, state of change, identification with the organization) and process (engagement and adaptation). Stakeholders discussed the diverse challenges and rewards of fatherhood, as well as the intrinsic paternal motivation to be a loving, supportive father and partner. Both community leaders and fathers emphasized the importance of tailoring program delivery and content to meet specific parental needs, including a focus on the social-emotional needs of new parents.
Conclusions
A structured process of multidimensional stakeholder engagement was successful in improving the design of a father-inclusive perinatal obesity prevention interventions. Father engagement was instrumental in both reinforcing community ties and increasing our understanding of fathers’ needs, resulting in improvements to program values, delivery strategies, personnel, and content. This study provides a practical approach for investigators looking to involve key stakeholders in the pre-implementation phase of intervention development.
Trial registration
ClinicalTrials.gov, NCT04477577. Registered 20 July 2020.
scite is a Brooklyn-based organization that helps researchers better discover and understand research articles through Smart Citations–citations that display the context of the citation and describe whether the article provides supporting or contrasting evidence. scite is used by students and researchers from around the world and is funded in part by the National Science Foundation and the National Institute on Drug Abuse of the National Institutes of Health.