A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses.

PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). BACKGROUND: Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended. REVIEW METHODS: Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006). DATA SOURCES: A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases. RESULTS: Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward. CONCLUSION: The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.

Understanding Parental Experiences Through Their Narratives of Restitution, Chaos, and Quest: Improving Care for Families Experiencing Childhood Cancer.

The purpose of this secondary analysis was to develop an enhanced understanding of the experiences of parents who have children in treatment for cancer. Data collected from 16 parents (12 mothers and 4 fathers) were analyzed using Frank's dialogical narrative analysis. Findings demonstrated that parents' experiences were represented in chaos, restitution, and quest narratives. Each of these narratives was only one instance of a very complex and changing parental experience that cannot be understood in isolation from the others. The holistic understanding provided by these findings contributes to a more comprehensive understanding of parental experiences of their child's illness and highlights the need for health professionals to invite conversations about parents' illness experience and attend to the specific narrative type parents are presenting to support them adequately. Additional research is required to develop supportive approaches for each narrative which takes into account the complexities of parents' experiences.

Development of two rapid lateral flow test strips for detection of foot-and-mouth disease virus SAT 1 and SAT 3.

Foot-and-mouth disease (FMD) is a highly contagious disease that affects cattle, sheep, goats, pigs, and over 70 species of wildlife. FMD continues to be a major economic concern for livestock productivity in many countries. FMDV has seven serotypes O, A, Asia 1, C, and Southern Africa Territories (SAT) 1, 2, and 3. Although SAT 1, and SAT 3 outbreaks are not as common as serotypes O, A, Asia 1, and SAT 2, outbreaks have also been reported. The recent outbreaks of SAT 1 occurred in Cameroon, Zimbabwe, South Africa, and Uganda, while most recent SAT 3 occurred in Namibia in 2019. The development of rapid and easy-to-perform FMDV detection tests is critical to control the outbreak and spread of FMD. The current project has produced monoclonal antibodies (mAb) against FMDV serotypes SAT 1, and SAT 3. Using these mAbs, two lateral flow immunochromatographic (LFI) strip tests for the detection of FMDV SAT 1, and SAT 3 have been developed. SAT 1 strip test detected 14 out of 15 SAT 1 field isolates. The SAT 3 strip test detected all four SAT 3 isolates tested, but the signal is weak for UGA 10/97 and showed no cross-reactivity with other FMDV serotypes. The diagnostic specificities of the SAT 1 and the SAT 3 tests are 100 %, which are higher than double antibody sandwich (DAS) ELISA. The diagnostic sensitivity of the SAT 1 test strip is lower than that of DAS ELISA, while the diagnostic sensitivity of the SAT 3 test strip is similar to that of DAS ELISA. The first reported SAT 1 and SAT 3 strip test combined with the previously developed SAT 2 strip test can be used for quick diagnosis in endemic countries in Africa. Rapid identification of FMDV serotypes is critical for disease control and vaccine selection. Also, these strip tests can be used in the laboratory to quickly screen samples from the field.

Supporting parental caregivers of children living with life-threatening or life-limiting illnesses: A Delphi study.

BACKGROUND: The impact of a child s life-limiting or life-threatening illness is significant on parents who experience a great deal of emotional, physical, and spiritual upheaval. Hope has been identified as an important inner resource for parental caregivers. Specifically, parental hope has been described as having four subproceses including Accepting Reality, Establishing Control, Restructuring Hope, and Purposive Positive Thinking. PURPOSE: The purpose of this Delphi study was to gather expert opinions from parents and formal care providers about the four subproceses essential to parental hope, to increase understanding of parental caregivers current support needs. As Phase one of a three-phase study, the findings provided direction in the development of a theory-based hope intervention. DESIGN AND METHODS: A Delphi study consisting of three rounds of survey questions and controlled feedback to experts was employed. Experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness. RESULTS: Sixty-eight experts consisting of parental caregivers of children diagnosed with life-limiting or life-threatening illnesses and those who care for them (community members, nurses, social workers, and physicians) were recruited to participate. Through three rounds of survey questions, response rates ranged from 92-97%. A consensus revealed eight major themes that support parental hope: Organize Basic Needs; Connect with Others; Prioritize Self-care; Obtain Meaningful Information; Take Things Day by Day; Advocate for Parental Participation; Manifest Positivity; and Celebrate Milestones. PRACTICE IMPLICATIONS: This study identified a wide variety of psychosocial needs for parental caregivers. Results also offered direction for a theory-based hope intervention while highlighting the need for additional research in this area. These results will provide the foundation for a booklet parents can work through in their journey of caring for a child with a life-limiting or life-threatening illness.

Keeping hope possible: a grounded theory study of the hope experience of parental caregivers who have children in treatment for cancer.

BACKGROUND: Hope has been found to support parents as they care for their child with a life-limiting or life-threatening illness. However, very little research focuses on the nursing care of parents of pediatric oncology patients, and therefore, nurses may have difficulty in understanding and supporting parental well-being. OBJECTIVE: The purpose of this qualitative study was to gain an understanding of the experience of hope for parents who care for their child in treatment for cancer. METHODS: Using purposive theoretical sampling, 16 parents participated in this study. Thirty-three open-ended, face-to-face interviews were conducted, and 14 parent journals were collected. Analysis of the data was conducted using Charmaz's constructivist grounded theory approach. RESULTS: A developing, substantive grounded theory was constructed. Parental hope was described as an essential, powerful, deliberate, life-sustaining, dynamic, cyclical process that was anchored in time; was calming and strengthening; and provided inner guidance through the challenging experience of preparing for the worst and hoping for the best. Parents' main concern was "fearing the loss of hope," which was ameliorated by the basic social process of "keeping hope possible" through accepting reality, establishing control, restructuring hope, and purposive positive thinking. CONCLUSIONS: Parents journeyed through numerous transitions related to the treatment of cancer that caused feelings of uncertainty, anxiety, stress, and loss of control. Hope was identified as vital to parents. IMPLICATIONS FOR PRACTICE: To minimize these adverse experiences, nurses can support parents' ability to keep hope possible and thus to optimize their well-being by understanding, assessing, and supporting parental hope.

Pain, distress, and adult-child interaction during venipuncture in pediatric oncology: an examination of three types of venous access.

This study examined pain and distress from needles in children undergoing blood sampling as a function of adult-child interaction and type of venous access (i.e., central external venous lines, internalized ports, or peripheral access via venipuncture). Participants were 55 pediatric oncology patients, aged 3-18 years, who were undergoing routine blood work. Pain ratings were obtained using the Faces Pain Scale-Revised (FPS-R) and conversation during the procedure was audio taped for coding using the Child-Adult Medical Procedure Interaction Scale-Revised (CAMPIS-R). Children's ratings of pain using the FPS-R were similar in the port (M=2.57/10, standard deviation [SD]=3.46) and peripheral (M=2.56/10, SD=3.24) groups, despite the fact that most children with internal ports were given a topical anesthetic. Similarly, there were no differences between port and peripheral groups in rates of child coping or distress, or parent and nurse observations of child pain. As would be expected, external line access was not associated with pain or distress, even among very young children, suggesting that they appropriately understood the pain rating scale. Results of the transcribed CAMPIS-R data indicate that the influences in adult-child interaction are bidirectional. Support was found for the well-established positive relationship between child distress and adult reassurance and empathy. Implications for intervention and selection of central venous access devices are discussed.