Therapeutic Relational Connection in Telehealth: Concept Analysis.

BACKGROUND: Therapeutic relational connection (TRC) in telehealth is a new concept that refers to the intentional use of relationship connection between health care providers and their patients as both parties work toward a therapeutic aim. It has been demonstrated that TRC positively affects patient-centered outcomes including adherence, self-management, and satisfaction with care. What is not known are best practices for establishing TRC during telehealth visits. The rapid emergence of telehealth during the COVID-19 pandemic has identified a number of challenges. These challenges include lack of human contact, distance creating mistrust, the inability to rely on nonverbal communication, and a sense of depersonalization. Training for health care providers in these interpersonal communication skills needed to establish TRC during telehealth visits is needed. OBJECTIVE: This paper aims to explore the evolutionary concept of TRC in telehealth. The purpose of this paper is to provide a concept analysis of TRC during telehealth interactions between providers and patients through a comprehensive review of the existing published literature. METHODS: Rodgers' evolutionary concept analysis method was used to guide this study. PubMed, Embase, PsycINFO, and CINAHL were used to search for relevant publications. An integrative review strategy aided by Rayyan software was used to identify a final sample of 13 papers for analysis. RESULTS: The proposed definition of TRC in telehealth is the experience of a mutually responsive patient-provider relationship that is built on mutual respect and understanding and informed by cultural humility, presence, empathy, and the ability to effectively evaluate patient concerns to work toward a therapeutic aim. The key attributes of TRC in telehealth are the provider's ability to evaluate patient concerns, interpersonal communication, cultural humility, mutual trust and respect, presence, empathy, and building relationships. Clinical presence, proper environment, knowledge about the use of technology (both patient and provider), use of verbal and nonverbal communication, and knowledge about community and culture are important antecedents of TRC. Consequences of TRC include improved communication resulting in mutual respect and caring, adherence to follow-up recommendations, increased coping, collaborative decision-making, and satisfaction with care. CONCLUSIONS: Telehealth visits necessitate alternative approaches to establishing TRC as compared to in-person clinic visits. With the rapid expansion of telehealth platforms and a heightened acceptance of the technology, there is a need to integrate knowledge and provide a clear conceptualization of TRC in telehealth as TRC has been demonstrated to result in positive patient-centered outcomes. Identifying the attributes and antecedents of TRC in telehealth allows us the opportunity to develop guidelines and educational interventions aimed at training health care providers in the skills needed to establish TRC during telehealth visits.

Shared Decision Making and Disease Modifying Therapy in Families of Children and Adolescents with Pediatric Onset Multiple Sclerosis.

BACKGROUND: Deciding on a disease modifying therapy (DMT) for the treatment of pediatric onset multiple sclerosis (POMS) often presents a challenge to families. Parents are often overwhelmed by DMT choices, but they desire to be an integral part of the decision making process for their child. There is no standard approach for how best to involve families in this process. The aim of this study was to describe the experience of decision making related to the use of disease modifying therapy in parents of children and adolescents with POMS. METHODS: The research aim was addressed using a descriptive survey design. Participants were recruited from the Pediatric MS and Related Disorders Program at Boston Children's Hospital as well as from the Pediatric Multiple Sclerosis Alliance online Facebook group. RESULTS: Overall, fewer than half of parents felt very satisfied with the DMT they chose for their child with POMS (44%). Parental satisfaction with the decision making process increased with a high level of control of the process (p < 0.0001), satisfaction with communication (p < 0.0001), and feeling supported by the healthcare provider (p < 0.0001). PRACTICE IMPLICATIONS: Healthcare providers should recognize the importance of the role of the family in the decision making process and how this directly impacts health outcomes. An open discussion at the time of DMT education should involve identification of family values and preferences. The use of online decision support tools have a valuable role in determining family preferences. CONCLUSION: There is an opportunity of healthcare providers to foster shared decision making practices to improve satisfaction among parents of children and adolescents with POMS. Healthcare providers should work closely with families to identify and incorporate their personal preferences for their role in the decision making process. Future research should include the testing of decision support tools for decision making in POMS.

Parental coping and childhood epilepsy: the need for future research.

Parents of children with epilepsy, like parents of children with many other chronic conditions, are faced with a constant feeling of uncertainty about their child's condition. This uncertainty can lead to a decreased ability to cope as evidenced by increased stress levels, negative mood states, and impaired family functioning. Because altered coping in the parent may have a profound negative impact on the child's psychosocial adjustment to living with a chronic condition, it is important to identify ways to facilitate positive coping skills in the parent. The purpose of this review was to critically analyze the existing literature related to the challenges associated with parenting a child who has epilepsy. Interventions geared toward facilitating coping in parents will also be reviewed, and gaps in the literature will be identified. Lastly, future implications for nursing research will be discussed.

The nurse's role in treatment decisions for the child with neurological impairment.

Healthcare providers are often faced with ethical dilemmas when making treatment decisions for a child with neurological impairment. Problems may stem from the fact that the wishes of the family may be in opposition to what the healthcare team feels is in the best interest of the child. There are many factors that need to be considered when determining treatment options for the child with neurological impairment. Nurses are in a unique position to advocate for the involvement of the child's family in making these difficult decisions.

Families' Experience of Pediatric Onset Multiple Sclerosis.

This study interviewed parents to understand families' experience with pediatric onset multiple sclerosis (POMS), which make up 2.7% to 10.5% of all MS cases. 21 sets of parents of children with a confirmed diagnosis of POMS were recruited from two pediatric MS centers. Families experienced stress from the uncertainty prior to diagnosis, anxiety over symptoms and possible progression of the disease, frustrations with the uncertain effects of disease-modifying treatments (DMTs), and difficulties with injections. Families had to cope with cognitive and physical effects of POMS at school, decisions about expectations and independence for the child, and extra demands POMS placed on the family. Most parents reported benefitting from support from physicians, the National Multiple Sclerosis Society, and the MS community. Families had benefitted from DMTs, and, despite the stresses, most had adapted successfully to the illness. Advice from interviewees to other parents and recommendations for improving family support are presented.

Scholarship in Neuroscience Nursing.

BACKGROUND: Scholarship is a hallmark of all professions and includes research and practice scholarship. Building the science for practice and care is a major responsibility of each profession. METHODS: The purpose of this article is to define clinical science as it applies to neuroscience nursing as well as to establish the foundation for the work of the Clinical Science Committee of the American Association of Neuroscience Nursing. CONCLUSIONS: Research scholars conduct investigations for discovery of new knowledge. Practice scholars develop clinical knowledge through clinical practice and experience and an inquiring mindset that questions why and how certain methods or processes contribute to the achievement of certain outcomes; they look for better ways to improve processes of care and practice that will achieve optimal evidence-based outcomes. Scholarship in both research and practice domains is critical to the advancement of neuroscience nursing. Many opportunities exist for neuroscience nurses to contribute to clinical science.

A Randomized Controlled Trial Testing the Efficacy of the Creating Opportunities for Parent Empowerment Program for Parents of Children With Epilepsy and Other Chronic Neurological Conditions.

BACKGROUND: Parents of children with epilepsy and other neurological conditions live with a feeling of constant uncertainty. The uncertainty associated with caring for a child with a neurological condition produces stress, which leads to decreased parental belief in caregiving skills, anxiety, and depression, ultimately altering parental functioning resulting in an increase in child behavioral problems. The stress associated with caring for children with neurological conditions is unlike caring for children with other chronic conditions. Neurological conditions are unpredictable, and there are often no warning signs before an acute event. This unpredictability accompanied with stigma results in social isolation and impacts family functioning. In addition, children with neurological conditions have a higher rate of psychological comorbidities and behavior problems when compared with children with other chronic conditions. This produces an additional burden on the parents and family. STUDY DESIGN: This randomized controlled trial tested the efficacy of the Creating Opportunities for Parent Empowerment intervention for parents of children with epilepsy and other neurological conditions. This intervention was administered at three intervals: (a) during hospital admission, (b) 3 days after hospital discharge by telephone, and (c) 4-6 weeks after hospital discharge. RESULTS: Forty-six parents of children admitted to the inpatient neuroscience unit at Boston Children's Hospital participated in the study. Several study limitations resulted in an inadequate sample size to obtain the power necessary to reach statistically significant results for most of the research questions. A one-between, one-within multivariate analysis of variance revealed that the main effect of time was significant for differences in state anxiety for both the usual care group and the intervention group, F(1, 20) = 9.86, p = .005, indicating that state anxiety for both groups combined was more pronounced during the hospitalization. A one-between, one-within multivariate analysis of variance showed that the effect of the interaction between time and group was significant for internalized behavior assessment system score only (p = .037) because the usual care group reported a significant decrease in internalizing behavior scores in their children over time. CONCLUSIONS: Findings from this study have significant implications for clinical practice and future research. Parents of children with neurological conditions often struggle to manage a constant feeling of uncertainty in their daily lives. Nurses possess the knowledge and expertise necessary to identify the psychosocial needs of these parents and provide education and support as needed. Future research should focus on designing interventions to meet the needs of these families and develop strategies to help improve the quality of life for both the parent and child living with a neurological condition.

Utility and safety of rituximab in pediatric autoimmune and inflammatory CNS disease.

OBJECTIVE: To assess the utility and safety of rituximab in pediatric autoimmune and inflammatory disorders of the CNS. METHODS: Multicenter retrospective study. RESULTS: A total of 144 children and adolescents (median age 8 years, range 0.7-17; 103 female) with NMDA receptor (NMDAR) encephalitis (n = 39), opsoclonus myoclonus ataxia syndrome (n = 32), neuromyelitis optica spectrum disorders (n = 20), neuropsychiatric systemic lupus erythematosus (n = 18), and other neuroinflammatory disorders (n = 35) were studied. Rituximab was given after a median duration of disease of 0.5 years (range 0.05-9.5 years). Infusion adverse events were recorded in 18/144 (12.5%), including grade 4 (anaphylaxis) in 3. Eleven patients (7.6%) had an infectious adverse event (AE), including 2 with grade 5 (death) and 2 with grade 4 (disabling) infectious AE (median follow-up of 1.65 years [range 0.1-8.5]). No patients developed progressive multifocal leukoencephalopathy. A definite, probable, or possible benefit was reported in 125 of 144 (87%) patients. A total of 17.4% of patients had a modified Rankin Scale (mRS) score of 0-2 at rituximab initiation, compared to 73.9% at outcome. The change in mRS 0-2 was greater in patients given rituximab early in their disease course compared to those treated later. CONCLUSION: While limited by the retrospective nature of this analysis, our data support an off-label use of rituximab, although the significant risk of infectious complications suggests rituximab should be restricted to disorders with significant morbidity and mortality. CLASSIFICATION OF EVIDENCE: This study provides Class IV evidence that in pediatric autoimmune and inflammatory CNS disorders, rituximab improves neurologic outcomes with a 7.6% risk of adverse infections.