Qualitative assessment of study materials and communication strategies used in studies that include DNA collection

To understand motivations and barriers to participation in studies that include DNA collection, focus group discussions were held with mothers who had participated in a case-control study of birth defects. Recruited mothers had completed an interview and had received a mailed kit containing cytobrushes to collect buccal cells for DNA from herself, her infant, and her infant's father. Six moderator-led focus groups were attended by a total of 38 women residing in Atlanta, Georgia. Focus groups were segmented by DNA collection status (biologics participants or nonparticipants), infant case-control status, infant birthweight, and maternal race and ethnicity. This report assesses maternal attitudes toward study materials and communication strategies. Across groups, respondents expressed concern about how their contact information was obtained. Study materials were described as clear and professional by most women, although some respondents reported confusion about disclosure of individual genetic results. Respondents generally reported that monetary incentives were not a motivation to participate, but increased perceived study legitimacy. Biologics nonparticipants expressed concerns about kit component sterility; government involvement; and DNA sample use, storage, and disposal. Respondents suggested that investigators provide feedback on whether sample collection was performed correctly and provide materials targeted to fathers to help alleviate paternal skepticism. Participation in DNA collection might be improved by strengthening study materials and communication strategies.     

Psychosocial assessment of expectant fathers

Summary Background: Comprehensive antenatal psychosocial assessment of mothers prior to the birth is established in many regions. While the influence of fathers on infant and maternal well-being is also recognised as commencing before birth, the early identification of needs among expectant fathers has not been addressed. Methods: The current study surveyed fathers attending antenatal classes in public and private hospitals (n = 307) in New South Wales, Australia, using psychosocial questions derived from the questions commonly asked in assessments of mothers. Results: The most frequent responses suggest that fathers, at the time of the birth, have needs in regard to their ability to cope with the stresses of new parenthood and the skills and knowledge to care for their new baby. Limitations: Conclusions from the study are limited in their application to the population of expectant fathers by the low response rate and the low numbers of low-income, ethnic-background, and indigenous fathers in the sample. Conclusion: Assessment of fathers by psychosocial questions similar to mothers is advised to detect fathers who may require assistance and parenting education for fathers in infant care. Correspondence: R. Fletcher, Family Action Centre, University of Newcastle, Callaghan, NSW 2308, Australia     

Use of video feedback intervention in an inpatient perinatal psychiatric setting to improve maternal parenting

This study utilizes video feedback to improve maternal parenting behavior in clinically depressed mothers admitted to a perinatal inpatient psychiatric unit. Depressed mothers (n = 74) were randomized to "video" (n = 25), "verbal" (n = 26), or "standard care" (n = 23). "Video" mothers were taped playing with their infant; interaction was reviewed with a mental health specialist. "Verbal" mothers only discussed interaction with their infant. "Standard care" mothers received only routine inpatient care. Mothers were assessed for mental health status, perceptions of baby behavior, and parenting competence. There was significant improvement in mental health status of all participants, regardless of intervention. Neither intervention had an advantage, compared to standard care, in improving parenting confidence or perceptions of infant behavior. Video mothers were more likely to report no change in their parenting confidence the more feedback sessions completed. The number of intervention sessions for each participant was limited by the duration of their inpatient admission. Most participants were on simultaneous pharmacotherapy and psychotherapy, as well as receiving intensive mothercraft assistance; this may have influenced intervention effectiveness. Results suggest that this type of intervention may be beneficial, but in the current format does not add sufficiently to standard care to be detected by the measures used.     

Proactive Planning for Vascular Access Therapy: One Hospital's Plan for Success

BackgroundVascular access is a critical component of care for patients in neonatal intensive care units (NICUs). Our NICU had only a small number of nurses cross-trained to perform peripherally inserted central catheter (PICC) insertions and was not able to provide coverage 24 hours a day, 7 days a week. We combined the vascular access team (VAT) and NICU PICC team to improve the timeliness of NICU PICC insertions, standardize care, and use ultrasound for all PICC placements.MethodsA paper guide tool was developed to prioritize PICC placements as emergent, same-day, or nonemergent. NICU nurses were trained to insert PICCs using ultrasound. Catheter insertion and care processes were standardized for the new centralized PICC team. NICU and VAT staff worked together to improve daily communication, hand-offs, and referrals. Criteria were developed to determine the appropriate hospital location for PICC insertions. Charge nurses began capturing information about patients with PICCs on daily planning sheets.ResultsFollowing implementation of the new combined VAT, the average wait time for emergent and same-day insertions decreased 10%. No adverse events were reported due to a delay in PICC placement or the PICC referral process.ConclusionsCombining the NICU PICC insertion nurses and the VAT into a new centralized PICC team provided an opportunity for growth in both areas. NICU PICCs are now placed efficiently based on patient acuity and referral prioritization throughout the hospital. NICU and VAT physicians and nurses have developed a strong partnership for the provision of PICC services for NICU patients.     

Interprofessional relationships and communication in primary palliative care: impact of the Gold Standards Framework.

BACKGROUND: High quality end-of-life care in the community is achieved with effective multidisciplinary teamwork, interprofessional communication between GPs and district nurses, and early referral of patients to district nurses. These aspects of palliative care are highlighted in the Gold Standards Framework, a programme recently established in UK primary care. AIM: To investigate the extent to which the framework influences interprofessional relationships and communication, and to compare GPs' and nurses' experiences. DESIGN OF STUDY: Qualitative interview case study. SETTING: Fifteen participating practices from three primary care trusts in England. METHOD: Thirty-eight semi-structured interviews were undertaken with GPs, district nurses, Macmillan nurses, and framework facilitators. RESULTS: Adoption of the framework often resulted in earlier referral of palliative care patients to district nurses. Multidisciplinary team meetings enabled communication for sharing knowledge, discussing management problems, and keeping colleagues informed; however, arranging and maintaining such meetings was often problematic. Nurses particularly valued formal meetings while GPs generally preferred informal ad hoc dialogue. GPs largely maintained control of the mode of multidisciplinary working. The best functioning teams used a mixture of formal and informal meetings with a relatively non-hierarchical working style. CONCLUSION: Implementing the framework enabled processes of communication associated with high quality palliative care in general practice, but there was marked variation in how this worked in individual teams. In general, hierarchical doctor-nurse relationships persisted.     

Mothers' remembrances of newborn intensive care: a predictive study

Six months after discharge, 94 mothers described their memories of their infant's hospitalization on an NICU. Mothers of sicker infants, those who had claimed difficulties with NICU staff, and those who felt less attached to their infant more often described painful reminders of this crisis. Pleasurable reminders were reported more often by mothers who had perceived greater personal control over their infant's recovery and had construed a purpose in this crisis. Mothers described several benefits of their memories and were more likely to do so when they had perceived a purpose in their misfortune.     

The prenatal triad: The importance of provider-patient communication with expectant fathers throughout the prenatal care process

Previous research has primarily focused on the relationship between providers and expectant mothers as a key element of quality prenatal care. Significantly less attention has been directed toward expectant fathers and the importance of their communication with prenatal care providers and involvement in the prenatal care process. Much of this limited existing literature emphasizes the health benefits including fathers would bring for mom and baby, but rarely is the potential benefit to fathers’ health included in the conversation. This discussion aims to highlight the value of this line of research for both communication and medical researchers and consider potential avenues for studying and promoting father engagement in prenatal care.     

'They think they can talk to nurses': practice nurses' views of their roles in caring for mental health problems.

BACKGROUND: Primary care teams have been encouraged to develop the care they provide to patients with mental health problems, and a greater role for practice nurses has been advocated. However, little is known about practice nurses' current level of involvement or their perceived strengths and limitations in caring for patients' mental health problems. AIM: To describe practice nurses' current experiences of caring for patients with mental health problems and to explore their perceptions about enlarging this role. METHOD: Pilot interviews were carried out with a purposeful sample of practice nurses to design a postal questionnaire, which was then sent to 635 practice nurses identified from family health services authority lists in six health authorities in the north-east of England. RESULTS: Completed questionnaires were returned by 445 (70%) practice nurses. Most nurses (83%) reported that they commonly saw patients with a range of mental health problems arising indirectly or directly in consultations. Many practice nurses (52%) lacked any formal mental health training and identified a broad range of training needs. A majority (80%) of responders had concerns about their abilities to address mental health problems effectively, given their existing workloads. However, most (61%) were keen to expand their role in mental health care if appropriate support and training were forthcoming. CONCLUSION: There is considerable potential for practice nurses to realize a greater and more effective role in the care of mental health problems in primary care. Developing practice nurses' contribution will require further training and support.     

Family-based intervention to enhance infant-parent relationships in the neonatal intensive care unit

OBJECTIVE: To examine how family-based interventions in the neonatal intensive care unit (NICU) may change parental knowledge and behaviors and decrease stress. METHODS: Eighty-four high-risk mother-infant dyads were randomly assigned to two intervention and one control groups. Group 1 (n = 28) participated in a demonstration of infant reflexes, attention, motor skills, and sleep-wake states. Group 2 (n = 31) viewed educational materials. Group 3 (n = 25), controls, participated in an informal discussion. Parent-infant interactions (Nursing Child Assessment Feeding Scale) were videotaped. Mothers completed measures of stress (Parenting Stress Index) and knowledge of infant cues (Knowledge of Preterm Infant Behavior Scale). RESULTS: Mothers in both intervention groups evidenced greater knowledge and more contingent and sensitive interactions with their infants than did the control group. Stress also differed across groups, and all mothers reported scores above norms. CONCLUSIONS: In a high-risk sample, short-term, family-based NICU interventions may enhance mothers' knowledge, sensitivity, contingency, and stress.     

Depression and anxiety symptoms of mothers of preterm infants are decreased at 4 months corrected age with Family Nurture Intervention in the NICU

Preterm delivery can precipitate maternal psychological morbidities. Family Nurture Intervention (FNI) was designed to minimize these by facilitating the emotional connection between mother and infant, beginning early in the infant’s neonatal intensive care unit (NICU) stay. We examined depression and anxiety symptoms of mothers of preterm infants at 4 months infant corrected age (CA). One hundred fifteen mothers who delivered between 26 and 34 weeks gestational age were randomized to receive standard care (SC) or standard care plus FNI. Mothers’ self-reported depressive symptoms (Center for Epidemiologic Studies Depression Scale: CES-D) and state anxiety (Spielberger State-Trait Anxiety Inventory: STAI) symptoms were assessed at enrollment, near to term age, and 4 months (CA). At 4 months CA, mean CES-D and STAI scores were significantly lower in FNI mothers compared to SC mothers. Effectiveness of FNI can only be evaluated as an integrated intervention strategy as it was not possible to control all aspects of FNI activities. Although there was considerable loss to follow-up, analyses suggest that resulting biases could have masked rather than inflated the measured effect size for depressive symptoms. FNI may be a feasible and practicable way to diminish the impact of premature delivery on maternal depressive and anxiety symptoms.     

Parents’ needs and perceived gaps in communication with healthcare professionals in the neonatal (intensive) care unit: A qualitative interview study

ObjectiveTo explore parents’ needs and perceived gaps concerning communication with healthcare professionals during their preterm infants’ admission to the neonatal (intensive) care unit (NICU) after birth.MethodsSemi-structured, retrospective interviews with 20 parents of preterm infants (March 2020), admitted to a Dutch NICU (level 2–4) minimally one week, one to five years prior. The interview guide was developed using Epstein and Street’s Framework for Patient-Centered Communication. Online interviews were audio-taped and transcribed verbatim. Deductive and inductive thematic analysis was performed by two independent coders.ResultsCommunication needs and gaps emerged across four main functions of NICU communication: Building/maintaining relationships, exchanging information, (sharing) decision-making, and enabling parent self-management. Communication gaps included: lack of supportive physician communication, disregard of parents’ views and agreements, missing communication about decisions, and the absence of written (discharge) information.ConclusionThis study improves our understanding and conceptualization of adequate NICU communication by revealing persisting gaps in parent-provider interaction. Also, this study provides a steppingstone for further integration of parents as equal partners in neonatal care and communication.Practice implicationsThe results are relevant to practitioners in the field of neonatal and pediatric care, providing suggestions for tangible improvements in NICU care in the Netherlands and beyond.     

Attention-deficit/hyperactivity disordered boys' relationships with their mothers and fathers: child,mother, and father perceptions

Self-perceptions of parent-child relationship quality were examined for 142 boys with attention-deficit/hyperactivity disorder (ADHD) and 55 control boys. Parent perceptions were examined as well. Mothers and fathers of ADHD boys perceived their relationships with their children more negatively than mothers and fathers of control boys. Interestingly, despite these differences in parental perceptions, ADHD boys did not differ from control boys in their perceptions of their relationships with their parents. Further, when ADHD boys' perceptions were compared directly to those of their parents, ADHD boys' reports were positively enhanced relative to those of control parent-child dyads. Together, these results may be viewed as providing support for a positive illusory bias in the social self-perceptions of ADHD children.     

Information exchange in the NICU: what sources of patient data do physicians prefer to use?

BACKGROUND: There are significant gaps in understanding what sources of patient information physicians utilize in the Neonatal Intensive Care Unit (NICU). OBJECTIVE: We conducted a qualitative study of physicians' self-report of information-seeking behaviors in the NICU of an academic medical center. METHODS: The study used a survey design to assess resident and faculty physicians' perceptions of their utilization of written and verbal sources of patient information. Faculty and resident responses were compared by t-tests to assess how perceptions of information-seeking behavior might differ between these two groups. RESULTS: Of the options listed in our survey, the three most commonly reported information sources were: (1) the bedside flowsheet; (2) conversations with resident physicians; and (3) conversations with nurses. Notes written by physicians-especially resident notes-were the least reported source of patient information. CONCLUSIONS: Physicians' preference to use verbal communication is consistent with prior studies. This study identifies that the bedside flowsheet is also an important source of information, while other written sources-especially resident notes-appear not to be utilized as frequently. Understanding why physicians use or fail to use different sources of patient information may shed light on ways to improve information exchange and reduce medical error in complex settings such as the NICU.     

Grief and post-traumatic growth in parents 2-6 years after the death of their extremely premature baby

OBJECTIVE: To assess grief and post-traumatic growth in parents 2-6 years after the death of a premature baby (24-26 weeks' gestation) and to evaluate Pictorial Representation of Illness and Self-Measure (PRISM) in the assessment of bereavement. METHOD: Fifty-four parents were assessed for their experiences during hospitalization and by questionnaires regarding grief (MTS), post-traumatic growth, affective symptoms and the visual representation of the baby and the self of the parents (PRISM). RESULTS: Even 2-6 years after the loss of their extremely preterm infant the parents still suffer a lot from their bereavement, mothers more so than fathers (Mann-Whitney U test, U = 230.5, p < 0.05). Having another child reduced the level of grief (U = 119.0, p < 0.05). Mothers showed more post-traumatic growth than fathers (U = 140.5, p < 0.001). For all parents a shorter distance between the baby and the self (PRISM) correlated with greater grief (rho = -0.62, p < 0.001); in multiple regression analysis MTS explained 38% of the SBS-variance. CONCLUSIONS: Clinicians should be aware that the death of an extremely premature infant triggers not only a painful long-term process of mourning but also of individual personal growth. Adaptation processes after the death differ depending on gender, with mothers experiencing more intense grief but also more growth than fathers. The modified PRISM test is recommended as a visual, non-verbal and easy-to-use instrument to assess bereavement.     

Association between parental depressive symptoms and impaired bonding with the infant

Impaired bonding with the infant is associated with maternal postpartum depression but has not been investigated extensively in fathers. The primary study aim was to evaluate associations between maternal and paternal depressive symptoms and impaired bonding with their infant. A secondary aim was to determine the associations between parents’ marital problems and impaired bonding with the infant. The study is part of a population-based cohort project (UPPSAT) in Uppsala, Sweden. The Edinburgh Postnatal Depression Scale (EPDS) at 6 weeks and 6 months postpartum and the Postpartum Bonding Questionnaire at 6 months postpartum were completed by 727 couples. The prevalence of impaired bonding was highest among couples in which both spouses had depressive symptoms. Impaired bonding was associated with higher EPDS scores in both mothers and fathers, as well as with experiencing a deteriorated marital relationship. The association between maternal and paternal impaired bonding and the mothers’ and fathers’ EPDS scores remained significant even after adjustment for relevant confounding factors. Depressive symptoms at 6 weeks postpartum are associated with impaired bonding with the infant at 6 months postpartum for both mothers and fathers. It is critical to screen for and prevent depressive symptoms in both parents during early parenthood.     

Missed appointments in primary care: questionnaire and focus group study of health professionals.

BACKGROUND: The issue of missed appointments in primary care is important for patients and staff. Little is known about how missed appointments, and the people who miss them, are managed in primary care, or about effective strategies for managing missed appointments. AIMS: To understand the perceptions of primary care staff as to why patients miss appointments, to determine how these perceptions influence their management, and to explore the merit of different management strategies. Design of study: A postal questionnaire survey and focus group interviews. SETTING: General practices in Yorkshire. RESULTS: Missed appointments were regarded as an important problem. Patient factors rather than practice factors were perceived as most important in causing missed appointments. Intervention strategies appeared to be driven by perceptions of why patients miss appointments. Negative attitudes, embodied in terms such as "offenders" to refer to those who missed appointments were prevalent, and favoured intervention strategies included punishing the patient in some way. Receptionists believed that general practitioners should address the issue of the missed appointment with the patient. General practitioners felt guarded about addressing missed appointments with their patients in case it affected the doctor-patient relationship. CONCLUSION: People who miss appointments were viewed negatively by primary care staff, and most of the reasons for missed appointments were focused on patients. These beliefs underpinned intervention strategies aimed mainly at punishment. Since there is no evidence base concerning interventions that are effective in reducing missed appointments, these negative attitudes may not be beneficial to staff or their patients.     

Developing an audio-based communication tool for NICU discharge of Latino families with limited English proficiency

ObjectiveResearch shows NICU Latino parents with limited English proficiency (LEP) feel less comfortable asking questions and participating in medical decision-making, which may negatively affect transition to community healthcare. Question prompt lists (QPL), suggested questions sometimes drawn from families and providers, can improve family-centered communication. We explored clinician and parent perceptions to inform development of and pilot a NICU discharge QPL.MethodsFocus groups with NICU and primary care providers explored perceived educational needs of Latino parents LEP and barriers to effective transition to community healthcare. Semi-structured interviews with Latino parents LEP explored perceptions of knowledge gaps and recommendations to improve the transition process. A Spanish audio QPL for parents and an English written version for providers were developed and pilot tested for acceptability.ResultsProvider focus groups (n = 27) and parent interviews (n = 19) identified themes: decreased parent activation, knowledge gaps, limited-use interpreters, unfamiliarity with healthcare system, and social isolation as barriers to smooth NICU-to-home transition. Providers (n = 11) and parents (n = 10) favored QPL introduction early in NICU admission, finding it useful to improve communication and transition processes for families.ConclusionOur QPL may address challenges faced by Latino parents LEP when transitioning home.Practice implicationsQPLs may improve Latino NICU infants’ healthcare outcomes.     

Effects of parent-provider communication during infant hospitalization in the NICU on parents: A systematic review with meta-synthesis and narrative synthesis

ObjectiveTo synthesize and analyse the literature on the effects of parent-provider communication during infant hospitalization in the neonatal (intensive) care unit (NICU) on parent-related outcomes.MethodsSystematic review with meta-synthesis and narrative synthesis. Databases (PubMed, PsycINFO, Cochrane Library, CINAHL, Web of Science, Scopus) were searched in October/November 2019. Studies reporting, observing, or measuring parent-related effects of parent-provider communication in the NICU were included. Study quality was assessed using the Quality Assessment Tool for Studies with Diverse Designs. Qualitative studies were meta-synthesized using deductive and inductive thematic analysis. Quantitative studies were analysed using narrative synthesis.Results5586 records were identified; 77 were included, reporting on N = 6960 parents, N = 693 providers, and N = 300 NICUs. Analyses revealed five main (positive and negative) effects of parent-provider interaction on parents’ (1) coping, (2) knowledge, (3) participation, (4) parenting, and (5) satisfaction. Communication interventions appeared impactful, particularly in reducing parental stress and anxiety. Findings confirm and refine the NICU Communication Framework.ConclusionsParent-provider communication is a crucial determinant for parental well-being and satisfaction with care, during and following infant hospitalization in the NICU.R. Practice Implications: Providers should particularly consider the impact on parents of their day-to-day interaction – the most occurring form of communication of all.     

Perception of premature birth by fathers and mothers

Summary VLBW-infants have a greater than average risk for cognitive and developmental disabilities. Premature birth is a distressing life event for parents which is experienced differently by mothers and fathers. To examine each parent's perception and coping of their child's premature birth, 20 consecutive pairs of parents were interviewed separately with a semistructured interview 2–3 weeks and 6–7 weeks postpartum. Parents also filled out the “Ways of Coping Checklist” questionnaire. All children had a birthweight of less than 1,500 g. Both fathers and mothers showed similar fears regarding possible death and handicaps of their child. There were differences between parents particularly shortly after birth: While fathers reacted with feelings of happiness and insecurity, mothers were shocked and grieving. In the interviews the most important parental coping strategy was “seeking social support”, especially for mothers. In the “Ways of Coping Checklist”“mobilising social support” and “seeking meaning” were the most important coping strategies. Mothers sought meaning in the premature birth and resorted to “blaming themselves” and “blaming others” as coping strategies more often than fathers. From birth onwards, fathers assessed their own coping abilities more positively than the mothers did. These differences between parents resolved during the next weeks as parents adapted to the new circumstances. Parents with marital problems had more difficulties in adaptation.     

Communication within low income families and the management of asthma

This study examines the effects of communication between low income urban parents and children about a chronic disease on the extent to which parent and child effectively manage the illness. Four asthma communication factors were identified by principal component analysis. We found that mothers whose preferred language was Spanish, and families who were not receiving public assistance, communicated more frequently about asthma in general. Spanish speaking mothers and their children communicated more about potential home treatments for asthma, and the more adults in the household the less there was communication about the need for emergency services for asthma. Mothers who preferred to speak Spanish had higher levels of management of the most recent asthma attack. Those whose children communicated with them about asthma in general were higher level managers. Children who influenced their parents' decisions about school attendance, and those whose mothers were more highly educated, had higher levels of asthma attack management. More educated mothers, ones whose children were younger at the time of the onset of asthma, and one who received public assistance, were more involved "in general" in their child's asthma care.