Development and validation of a supportive programme for family caregivers of children suffering from cystic fibrosis: protocol for a sequential exploratory mixed-methods study.

INTRODUCTION: Families with children who have cystic fibrosis (CF) face a multitude of challenges. They require complex and time-consuming daily care, various forms of knowledge and intricate care responsibilities. One of the most critical challenges that Iranian families of children with CF face is the lack of adequate support from health teams in the early stages of diagnosis, frequent hospitalisation and the postdischarge process. Unfortunately, limited studies have been conducted in this field, and the Iranian society lacks a comprehensive support programme for these families after leaving treatment centres or home care teams. Therefore, it is necessary to identify and redefine the needs of these families for better care and support in Iran. METHODS AND ANALYSIS: A mixed-method research design with an exploratory sequential approach will be used in this study. The study consists of three stages: stage (1) the qualitative phase (conventional content analysis and scoping review); stage (2) the programme design phase (development of a support programme) and stage (3) the quantitative phase (validation of the programme through the Delphi method). In the first stage, data will be collected through interviews. Key concepts, evidence and gaps in research will also be identified, collected and analysed through a scoping review. In the second stage, a support programme will be designed based on the results of the content analysis of interviews and the findings from the scoping review. In the final phase, the study will aim to validate the designed programme through a Delphi study. ETHICS AND DISSEMINATION: This study formed part of a Ph.D. degree and was approved by the ethics committee of Tabriz University of Medical Sciences (IR.TBZMED.REC.1402.395). Informed consent will be obtained from all study participants. Findings will be published in a peer-reviewed journal.

Organisational challenges of pain management in neonatal intensive care unit: a qualitative study.

OBJECTIVES: Despite credible evidence, optimal neonates' pain management in the neonatal intensive care unit (NICU) is a challenging issue. In this regard, the organisational context is an essential factor. The existing challenges vary depending on the context, and investigating them can help to improve the quality of care. The study aimed to explore organisational challenges to neonates' pain management in the NICU. METHODS: This qualitative study included 31 nurses and physicians in the NICU of Children's Hospital, Tabriz, Iran. Data collection was done through individual and focus group interviews. For data analysis, we used conventional content analysis. RESULTS: The identified challenges included organisational culture (poor interprofessional collaboration and low parental participation), organisational structure (lack of unified approach in relieving pain and limited supervision for pain management) and organisational resources (lack of time due to high workload and inadequate educational programmes). CONCLUSIONS: Many organisational factors consistently affect neonatal pain management. Adopting some approaches to enhance the cooperation of treatment team members, holding educational programmes, proper organisational supervision and implementing a unified neonatal-based pain management programme could improve neonatal pain management.

Care providers' experiences regarding barriers to maternal participation in neonatal pain management.

BACKGROUND: Mothers' involvement in the pain management of infants admitted to the intensive care unit can alleviate the infants' pain. Despite International guidelines, maternal involvement in neonatal pain management is low. Hence, investigating the perspectives of care providers (CPs) on barriers to maternal participation can be helpful in developing practice guidelines. AIMS: The purpose of this study was to investigate the experiences of CPs on barriers to maternal involvement in neonatal pain management in the intensive care unit. DESIGN: In this study, a qualitative design based on the content analysis approach was used. METHOD: We included 24 nurses and physicians in the neonatal intensive care unit from February to September 2020. Data were collected through conducting 11 individual interviews and two focus group discussions with eight and five participants, respectively. RESULTS: Three main categories and seven sub-categories were found, including maternal barriers (inadequate emotional readiness and unfamiliarity with role), CPs' barriers (time pressure, fear of family-care provider tension, and insufficient knowledge), and organizational barriers (neglected joint decision-making and restricted organizational participative policies). CONCLUSIONS: The identified barriers could be classified into those related to mothers, care providers, and organizations. The lack of appropriate interaction and cooperation between parents and care-providers can affect the emergence of barriers related to the mothers and staff. RELEVANCE TO CLINICAL PRACTICE: There is a lack of knowledge regarding neonatal pain management in the health care team and mothers. Educating mothers and CPs about the benefits and ways of mothers' participation can increase readiness and capabilities. Providing clear guidelines about family-centred care and promoting parent-CPs' interactions can increase the mothers' participation.

The effect of maternal multisensory stimulations on bath stress in premature infants: A randomized controlled clinical trial.

Bathing in Neonatal Intensive Care Unit (NICU) is a stressful experience to preterm infants. Reducing this stress is an important challenge in bathing preterm infants. The aim of present study was to evaluate the effects of maternal supportive interventions on the stress caused by swaddled bathing in preterm infants. In this randomized clinical trial, 48 preterm infants randomly allocated into control and intervention groups. In intervention group the mothers were asked to initiate multisensory supportive interventions 5 min before and through swaddled bathing. In controls the mothers were only present during bathing. To determine the level of stress, infant responses were recorded by camera 5 min before bathing and 5 min after bathing. Then infants' stress measured by using Newborn Stress Scale (NSS). Finding was shown that the level of stress in control group was especially increased after bathing that was statistically significant (p < 0.001). Although there was an increase in stress among interventions but it was not statistically significant (p > 0.05). Considering the positive effects of multisensory interventions in decreasing the stress of preterm infants, it can be recommended as cost-free and non-pharmacological care during infants bathing.

Health care staff support for mothers in NICU: a focused ethnography study.

BACKGROUND: Mothers of premature newborns in the neonatal intensive care unit (NICU) have complex needs and require a significant amount of support during the NICU admission. However, little is known about mothers' support needs in the NICU. This study aimed to explore health care staff and mothers' experiences of meeting the mothers support needs in the NICU. This study aimed to explore health care staff and mothers' experiences of meeting the mothers' support needs in the NICU. METHODS: A focused ethnographic approach was adopted. Observations and interviews with 21 mothers, 18 nurses, and five physicians were undertaken over a seven months period. Qualitative data analysis was conducted using the Roper and Shapira (2000) five-step framework. RESULT: Two main themes of "insufficient provision of the mothers' support needs" (subthemes: inadequate accompany of the mothers in care, assigning monitoring and care to the mothers, inadequate sharing of medical the information) and "supporting the mothers in certain circumstances" (subthemes: reassuring the mothers, supporting the mothers with reduced functional capacity, providing information) were obtained. CONCLUSION: The mothers experienced a gap between expected and actual support provided by health care staff. Although, the health care staff believed that mothers' support was a necessity, it was not their main concerns, and they considered workload as a barrier for the mothers support in the NICU.

Mutual trust in infant care: the nurses and mothers experiences.

The relationship between healthcare providers and parents of infants in neonatal intensive care unit is based on trust and constitutes a core measure of family-centred care and health. The aim of the present qualitative study was to explore mothers and nurses experiences of trust in one another around the caregiving of the hospitalised infant in intensive neonatal care unit. Focused ethnographic research study conducted through observations and in-depth interviews with 20 mothers and 16 nurses in NICU of Tabriz (Iran) in 2017. Two main themes of 'gradual and fragile trust of mother-to-nurse' (subthemes: Primary trust-mistrust, mother's trust to responsible nurse, mother trust Increase with skilful nurse performance, and vulnerability to trust) and 'gradual and fragile trust of nurse-to-mother' (subthemes: Nurse's initial assessment of trust to mother's readiness to participate, Development of trust to mother, and vulnerability of nurse's trust to mother) were obtained. The present study revealed that mutual trust between the nurse and the mother in the care of the infant was a gradual and progressive process that was achieved over time. Complexities around the care of a hospitalised infant influenced how fragile or vulnerable the trust became between nurse and mother. Findings from this research can be used in supporting increased maternal participation in infant care and improvement of family-centred care in the neonatal intensive care unit.

Mothers' Emotional Experiences Providing Care for Their Infants Within the Culture of an Iranian Neonatal Unit.

BACKGROUND: Each year, 5% to 8% of Iranian newborns require care in a neonatal unit (NU). Reasons for admission include prematurity, infection, and congenital anomalies. Little research has been conducted on the culture of Iranian NUs and the impact this has on mothers' emotional caregiving experiences. PURPOSE: To explore the emotional caregiving experiences of mothers in an Iranian NU. METHODS: Focused ethnography was used for this study. Mothers (n = 19) of term and preterm infants participated. Data were collected using observations and interviews. Roper and Shapira's 5-step framework was used to analyze the data. FINDINGS: Four major themes emerged: (a) fear, (b) loneliness, (c) competence, and (d) pleasure. Fear occurred when mothers felt unprepared to care for their infants. They were afraid of harming their infant or repeating previous mistakes. Loneliness consisted of bearing the burden of care while feeling alone. Competence occurred when the mothers experienced an increasing ability to provide care for their infants and a growing self-confidence. Finally, the mothers described pleasure as they began to feel worthiness as mothers and intense love for their infants. IMPLICATIONS FOR PRACTICE: The sense of fear and loneliness shared by these mothers has significant implications for practice. While it may be a challenge for nurses to provide adequate support for mothers due to the heavy workload of Iranian NUs, close relatives and other support persons may play a key role. IMPLICATIONS FOR RESEARCH: Future research should be conducted on the impact of maternal support on mothers' NU experiences in Iran.

Effects of Gentle Human Touch and Field Massage on Urine Cortisol Level in Premature Infants: A Randomized, Controlled Clinical Trial.

Introduction: Hospitalization in neonatal intensive care unit may leads to many stresses for premature infants. Since premature infants cannot properly process stressors, identifying interventions that reduce the stress level for them is seems necessary. The aim of present study was to compare the effects of Field massage and Gentle Human Touch (GHT) techniques on the urine level of cortisol, as an indicator of stress in preterm infants. Methods: This randomized, controlled clinical trial was carried out in Al-Zahra hospital, Tabriz. A total of 84 premature infants were randomly assigned into three groups. First groups were touched by their mothers three times a day (15 minutes in each session) for 5 days by GHT technique. The second group was received 15 minutes Field massage with sunflower oil three times a day by their mothers for 5 days. The third group received routine care. In all groups, 24-hours urine samples were collected in the first and sixth day after the intervention and analyzed for cortisol level. Data were analyzed by SPSS software. Results: There were significant differences between mean of changes in cortisol level between GHT and control groups and Field massage and control groups (0.026). Conclusion: Although the massage with Field technique resulted in a significant reduction in blood cortisol level, but the GHT technique have also a similar effect. So, both methods are recommended for decreasing of stress in preterm infants.

The Effect of Recorded Mum's Lullaby and Brahm's Lullaby on Oxygen Saturation in Preterm Infants: a Randomized Double-Blind Clinical Trial.

INTRODUCTION: Music stimulation has been shown to provide significant benefits to preterm infants. Thus the aim of this study was determine the effect of recorded mum's lullaby and Brahm's lullaby on oxygen saturation in preterm infants. METHODS: This double-blind randomized controlled trial was carried out on 66 premature newborns with the postnatal age of ≥3 days and weight ≤ 2800 grams at Taleghani Hospital. Infants were randomly divided into three groups: control, Brahm's lullaby and Mum's lullaby groups. Infants were continuously monitored for primary outcome of percutaneous oxygen saturation, for three consecutive sessions. RESULTS: There were significant difference in neonate oxygen saturation between the Brahm's lullaby and Mum's lullaby as compared with control groups in the 15 minutes after intervention. CONCLUSION: This study showed beneficial effects of Brahm's lullaby and Mum's lullaby sound. Therefore; it may be used for improving short term outcomes in premature infants.

Attitude toward Child Abuse among Mothers Referring Health Centers of Tabriz.

INTRODUCTION: Parental attitude is an important factor in prediction of child abuse. Awareness of people's attitudes is important in the prediction of their behavior and controlling it. This study was conducted to determine the mothers' attitudes toward child abuse. METHODS: In this cross-sectional study, 261 mothers referred to the 13 health centers of Tabriz with children aged 2-12, they were selected by a multistage method and their attitudes were assessed using a questionnaire within 2 months. Higher score were representing more negative attitudes. RESULTS: The results showed that the mean score of total attitude toward child abuse was significantly higher than the middle and was significantly associated with mothers' educational level, employment status, attendance status, number of children they have, and economic status. CONCLUSION: The results showed that although the mothers' attitudes toward child abuse were negative, because of the relationship between mothers' attitudes with their demographic characteristics, it is necessary to enhance mothers' quality of life, and their social and spiritual support to improve their attitudes and prevent the child abuse.