Increasing representation and diversity in health research: A protocol of the MYHealth research training program for high school students.

BACKGROUND: Despite decades of calls for increased diversity in the health research workforce, disparities exist for many populations, including Black, Indigenous, and People of Color individuals, those from low-income families, and first-generation college students. To increase representation of historically marginalized populations, there is a critical need to develop programs that strengthen their path toward health research careers. High school is a critically important time to catalyze interest and rebuild engagement among youth who may have previously felt excluded from science, technology, engineering, and mathematics (STEM) and health research careers. METHODS: The overall objective of the MYHealth program is to engage high school students in a community-based participatory research program focused on adolescent health. Investigators will work alongside community partners to recruit 9th through 12th graders who self-identify as a member of a group underrepresented in STEM or health research careers (e.g., based on race and ethnicity, socioeconomic status, first generation college student, disability, etc.). MYHealth students are trained to be co-researchers who work alongside academic researchers, which will help them to envision themselves as scientists capable of positively impacting their communities through research. Implemented in three phases, the MYHealth program aims to foster a continuing interest in health research careers by developing: 1) researcher identities, 2) scientific literacy, 3) scientific self-efficacy, and 4) teamwork and leadership self-efficacy. In each phase, students will build knowledge and skills in research, ethics, data collection, data analysis, and dissemination. Students will directly collaborate with and be mentored by a team that includes investigators, community advisors, scientific advisors, and youth peers. DISCUSSION: Each year, a new cohort of up to 70 high school students will be enrolled in MYHealth. We anticipate the MYHealth program will increase interest and persistence in STEM and health research among groups that have been historically excluded in health research careers.

Making pain assessment more accessible to children and parents: can greater involvement improve the quality of care?

OBJECTIVES: To determine whether nursing and parental pain assessment documentation and analgesia administration increased with the use of a temporary tattoo of a pain intensity scale (TTPS) compared with a paper version of the pain scale (PPS). To document any adverse skin reactions from the use of the TTPS and to assess the feasibility and acceptability of the PPS and TTPS for use as postoperative pain assessment tools in the home and clinical setting. METHODS: Two pilot randomized controlled trials were conducted to test the TTPS intervention and the PPS control condition in children aged 6 to 12 years, after surgery. Trial 1 involved children admitted to hospital for planned inpatient surgery (n=86). Trial 2 involved children discharged home following day case surgery (n=25). RESULTS: The TTPS was well accepted and there were no adverse effects. Our hypothesis that the TTPS would increase documentation of pain assessment or analgesic administration was not supported. However, a number of confounding factors may explain the findings. Children in both trials indicated greater overall satisfaction with the TTPS and responses from both parents and children suggested some aspects of the quality of the pain management experience were enhanced with use of the TTPS in both trials. DISCUSSION: The TTPS is a new method to engage children in pain assessment, which may have positive effects on the quality of postoperative pain assessment and management in hospital and home settings. Larger trials are needed to determine the effectiveness of the TTPS across all pediatric settings and for children with nonsurgical and also surgical pain. The findings from these pilot trials provide useful information for design and power estimation for further research in inpatient and home settings.

Measuring neonatal intensive care unit-related parental stress.

AIMS: This paper reports a study: (1) to determine the validity and reliability of the Parent Stressor Scale:Neonatal Intensive Care Unit (PSS:NICU) for use with United Kingdom (UK) parents; (2) compare UK scores with those from a contemporary reference sample from the United States (US), (3) to identify the sources of greatest NICU-related stressors for parents and (4) to identify demographic or situational factors influencing NICU-related parental stress. BACKGROUND: Evaluation of the adequacy of nursing care and psychosocial support services for parents of ill infants in the NICU requires valid and reliable measures of parental stress. The PSS:NICU is a well-validated scale developed in the US to measure NICU-related parental stress. However, it has not been tested in the UK. METHODS: Consecutive samples of parents (n = 257) of infants in nine UK NICUs and two reference US units completed the PSS:NICU and the Spielberger State-Trait Anxiety Scale approximately 1 week after admission. Psychometric properties of the PSS:NICU, including internal consistency reliability and construct, concurrent and predictive validity, were evaluated. RESULTS: PSS:NICU scores were similar in the UK and US samples and high internal consistency reliability was found for all metrics (e.g. Overall Stress: 0.94 for both samples). A three-factor principal components solution accounted for 66% of the variance in the scores, with the items grouped into the three a priori scales specified in the PSS:NICU (Infant Behaviour and Appearance, Parental Role Alterations, and Sights and Sounds). Stress Occurrence and Overall Stress were moderately correlated with State Anxiety in both samples (r = 0.46-0.61, P < 0.001). Thirty-one per cent of the variance in Stress Occurrence in the UK sample was explained by State Anxiety, infant severity of illness score, parent gender, and less frequent visitation. CONCLUSIONS: The PSS:NICU demonstrated appropriate psychometrics in a large sample of parents from diverse NICUs in the UK. These findings support its wider use in research and clinical practice to identify parental distress and evaluate the effectiveness of nursing care and psychosocial support services for parents.

Parents' views about infant pain in neonatal intensive care.

OBJECTIVE: The purpose of this study was to describe parents' perceptions and feelings about their infant's pain experience and pain care in the neonatal intensive care unit. METHOD: Thematic content analysis was used to encode the qualitative information contained in parents' written comments on a questionnaire about their views on infant pain and pain care. The questionnaire was completed by 257 parents from 9 neonatal units in the United Kingdom (n = 196) and 2 neonatal units in the United States (n = 61). RESULTS: Parents' comments indicated that they saw medical procedures as the major source of their infant's pain, wanted more information, and generally desired more involvement in this aspect of their infant's care. Parents' comments indicated that their infant's pain affected them emotionally and that they worried about their future relationship with their infant. Parents also articulated specific ways in which health care professionals could assist them and their infants in coping with neonatal intensive care unit-related pain. DISCUSSION: The findings from this study expand knowledge about how parents understand and respond to the difficult situation in which their newborn infant is subjected to essential but painful procedures. The findings provide direction for research and clinical practice interventions aimed at: 1) helping parents to gain knowledge and correct their misperceptions; 2) engaging parents in meaningful dialog about their concerns and preferences for involvement; and 3) helping parents to develop effective coping strategies to reduce psychologic distress related to their infant's pain.

The meaning of the breast cancer follow-up experience for the women who attend.

Attendance at a breast cancer follow-up clinic is a standard part of the after care offered to women who have had breast cancer. This research was undertaken to elicit an insight into the experience of attending for follow-up after primary breast cancer. The research was undertaken using a qualitative approach using the method of phenomenological enquiry in order to gain understanding from the perspective of the women who attend follow-up clinic. Six women were interviewed. Interviews were taped and transcribed verbatim. Analysis of the transcripts indicated a cycle of emotions associated with attendance at follow-up clinic. Required attendance produced anxiety in women who were otherwise living free from anxiety about breast cancer recurrence. This anxiety appeared to create a need to attend in order to gain reassurance of continued well-being. Despite gaining reassurance all of the women in this study reported feelings of dissatisfaction with the follow-up clinic experience. In the current climate of over-extended and under-staffed clinics it may be timely to examine current practice for effectiveness in terms of physical and psychological impact on the patient and efficient use of healthcare resources.