Prospective Qualitative Study Research Articles

Development of Moral Injury in ICU Professionals During the COVID-19 Pandemic: A Prospective Serial Interview Study.

During the COVID-19 pandemic, ICU professionals have faced moral problems that may cause moral injury. This study explored whether, how, and when moral injury among ICU professionals developed in the course of the COVID-19 pandemic. This is a prospective qualitative serial interview study. Two hospitals among which one university medical center and one teaching hospital in the Netherlands. Twenty-six ICU professionals who worked during the COVID-19 pandemic. None. In-depth interviews with follow-up after 6 and 12 months. In total, 62 interviews were conducted. ICU professionals narrated about anticipatory worry about life and death decisions, lack of knowledge and prognostic uncertainty about COVID-19, powerlessness and failure, abandonment or betrayal by society, politics, or the healthcare organization, numbness toward patients and families, and disorientation and self-alienation. Centrally, ICU professionals describe longitudinal processes by which they gradually numbed themselves emotionally from patients and families as well as potentially impactful events in their work. For some ICU professionals, organizational, societal, and political responses to the pandemic contributed to numbness, loss of motivation, and self-alienation. ICU professionals exhibit symptoms of moral injury such as feelings of betrayal, detachment, self-alienation, and disorientation. Healthcare organizations and ICU professionals themselves should be cognizant that these feelings may indicate that professionals might have developed moral injury or that it may yet develop in the future. Awareness should be raised about moral injury and should be followed up by asking morally injured professionals what they need, so as to not risk offering unwanted help.

Exploring the social power of Christmas: a prospective qualitative study of assigning meaning to Christmas along the life course.

This article relies on a prospective qualitative study, that provides valuable insight into the mechanism through which the meaning of holidays is built over time. Following a life course perspective, the article analyses the continuities as well as the twists and turns of the meaning of Christmas in relation to significant turning points that occur along the paths of individual lives in transition to adulthood. Grounded on an inductive approach, the study draws on longitudinal qualitative data collected through solicited diaries, kept by 14 young Romanian adults, around Christmas time, along four panel waves (2004, 2010, 2016, 2020). Results show that there is no universal configuration of the meaning of Christmas, but rather a diversity of personalised dynamic configurations, in line with individuals' subjective realities, which are sensitive to family traditions passed down during socialisation, and constantly updated with each generation that assumes them, but also to significant life events that occurred on their early adult life course trajectories, determining a re-evaluation of attitudes about self, life, religion and others. The article concludes that Christmas, as a social construct, is a malleable bearer of values, which acts both as a 'sword' and as a 'shield' that diarists use according to the needs, wishes and challenges that arise in their transition from adolescence to enhanced adulthood.

Comparative Assessment of Nutritional Status of School Children Aged 6-8 Years in Selected Urban and Rural Schools of Belagavi – A Pilot Study

Background One of the biggest health issues of poor nations is malnutrition. A school survey is beneficial because it is easy to conduct and enables to detect the presence of disease among large number of students of a particular age group.Aim To assess and compare nutritional status of school children in urban and rural schools.Methods In Belagavi district a prospective qualitative study was carried out including 60 children each from urban and rural schools aged 6 to 8 years. The nutritional status of children was determined using the anthropometric parameters such as weight for height weight for age and height for age based on Waterlowrsquos and Gomezs classifications of malnutrition.Results The study included 120 students 60 from rural area and 60 from metropolitan area. Mild wasting was found in 18 urban and 20 rural students moderate wasting was noted in eight urban and 20 rural students while severe wasting was observed in three rural students and normal weight for height was noted in 34 urban and 17 rural students. Mild stunting was observed in 17 urban and 18 rural children moderate stunting in two urban and four rural severe stunting was noted in one child from rural school. Normal height for age according to Waterlowrsquos classification was observed in 41 urban and 37 rural students. According to Gomezs classification mild malnutrition was identified in 17 urban students and 33 rural students moderate malnutrition was found in five urban and six rural students and severe malnutrition was found in one rural student. On comparison of nutritional status of urban and rural children stunting was observed in 19 urban and 23 rural children whereas wasting was identified in 26 urban and 40 rural children. Furthermore malnutrition affected both urban children 22 and rural children 43.Conclusion According to the present study children attending rural schools in Belagavi showed malnutrition more frequently compared to those attending urban schools. The present study will aid in determining the causes of malnutrition and the most effective ways to prevent it in both urban and rural settings.nbsp

Development of Adaptive Sitting Cum Standing Positional Device - User's Centric Approach

Background As per India Census 2011 Cerebral palsy affects 3.8 of Indians or roughly 15-20 of physically challenged children. An estimated 31000 live births are affected in India. The most prevalent motor impairment in children is cerebral palsy. The adaptive devices need to accommodate different factors in terms of individual health condition body structure body function capacity gender age ethnicity and preference. In addition physical changes that occur in children as they grow and develop need to be accommodated. UNICEF stated that the frequency of changes to be made in an assistive product depends on how fast the child develops and grows which will vary over time as well as between children. This adds to the economic burden especially in families below the poverty line.Aim To build a device for dual usage seating cum standing for children with delayed milestones with versatile features to accommodate as they grow.Methods Anthropometric measurements of children with delayed milestones aged between 3-12 years were collected and assimilated in building the innovative twin device and its features. User satisfaction feedback was collected about the innovative twin device using Quebec User Evaluation of Satisfaction with Assistive Technology QUEST using a prospective qualitative study design. Simple random sampling methods were used to recruit 255 parents of children with delayed milestones from 2016 to 2019 across India and Bangladesh. They were prospectively observed and the perceived effectiveness usability and service delivery system of twin device was collected from parents mostly through telephonic and in-person interviews after three months. Results Around 121 usersparents gave their QUEST feedback. The mean satisfaction on the twin device was recorded as 4.16 Quite satisfied and the service delivery was rated 4.81 Very satisfied. Overall QUEST score was recorded as 4.48 Quite satisfied. The three most satisfying features of the device reported were safe and secure 61.16 easy to use 57.02 and comfortable 56.2.Conclusion Twin device and delivery services quality was measured through user satisfaction in terms of strength durability capacity safety and comfort. Provision of assistive technology includes the design production user satisfaction and quality of life.

Feasibility of a novel ultra-low-cost bubble CPAP (bCPAP) System for neonatal respiratory support at Muhimbili National Hospital, Tanzania.

Continuous Positive Airway Pressure (CPAP) is recommended in the treatment of respiratory distress syndrome of premature newborns, however there are significant barriers to its implementation in low-resource settings. The objective of this study was to evaluate the feasibility of use and integration of Vayu bCPAP Systems into the newborn unit at Muhimbili National Hospital in Tanzania. A prospective qualitative study was conducted from April 6 to October 6 2021. Demographic and clinical characteristics of patients treated with Vayu bCPAP Systems were collected and analyzed. Healthcare workers were interviewed until thematic saturation. Interviews were transcribed, coded, and analyzed using a framework analysis. 370 patients were treated with Vayu bCPAP Systems during the study period. Mean birth weight was 1522 g (500-3800), mean duration of bCPAP treatment was 7.2 days (<1-39 d), and survival to wean was 81.4%. Twenty-four healthcare workers were interviewed and perceived Vayu bCPAP Systems as having become essential for treating neonatal respiratory distress at MNH. Key reasons were that Vayu bCPAP Systems improve patient outcomes, are easy to use, and more patients are now able to receive quality care. Barriers to integration included durability of oxygen tubing material and training. It was feasible to implement and integrate Vayu bCPAP Systems into the care of neonates at Muhimbili National Hospital.

Identifying Patient-Centered Outcomes for Caregivers and Children With Musculoskeletal Infections.

Musculoskeletal infections (MSKI), including osteomyelitis and septic arthritis, are among the most common invasive infections in children and have the potential to cause significant morbidity. Guidelines have been developed to optimize care based on clinician-developed endpoints. Patient-centered outcomes have not been defined for children with MSKI. This study identified outcomes most important to caregivers and patients with MSKI. This was a single-center prospective qualitative study of children 6 months to 18 years of age hospitalized with MSKI from November 2019 to September 2021. Using design-research methods, patients and caregivers participated in interviews and/or completed journals to describe their experiences during acute infection and recovery from MSKI. A total of 51 patient/caregivers were approached to participate in the study, 35 of whom declined to participate, resulting in 8 interviews conducted and 14 journals collected from 16 patient/caregivers. From these, a journey map was created highlighting points of stress during the onset of symptoms, through hospitalization, and returning home with new challenges. In addition, patient-centered outcomes were identified. For caregivers, these included managing mental health, managing responsibilities, and receiving support. Both caregivers and patients shared the importance of understanding of treatment plans and responsibilities. For patients, improving mental and physical health was important. Management of children with MSKI is complex and requires a multidisciplinary team approach. Validation of the outcomes identified and development of a measurement tool are needed. Addressing the patient-centered outcomes we identified in this study can greatly improve the holistic care of children with MSKI.

Attending pediatric acutely ill patients at home: families’ socioeconomic characterization, expectations, and experiences

BackgroundSJD a Casa is an acute pediatric hospital-at-home program that was initiated in 2019. For a thorough understanding of acute pediatric homecare programs, an analysis of all related factors, including the medical, social, and economic aspects as well as the family’s experience, is essential. However, no previous study has attempted a comprehensive evaluation of this topic in relation to a complex program such as ours (in terms of the diseases and treatments offered). In this study, we aimed to finely characterize the population that opts for pediatric homecare programs and obtain a thorough understanding of the families’ needs, which will improve our understanding of the program and potentially reveal possible deficiencies.MethodsThis prospective quantitative and qualitative study involved collection of ordinal data as well as statements made by the caregivers of patients undergoing homecare. A total of 372/532 families were asked to answer two independent questionnaires (preadmission and postadmission) that evaluated their socioeconomic characteristics; expectations and experiences; and factors influencing the preference for homecare. The results were presented as frequencies and comparisons (Fisher’s exact test).ResultsThe families had an adequate social network and a less-than-expected workload, and most families responded that they would have repeated the experience despite the workload. The expectations regarding the caregiver’s well-being at home were better than the actual situation, since some caregivers experienced anxiety or fear. The rating for homecare was better than that for the inpatient care offered before the homecare transfer.ConclusionsFamilies included in the program were content with the homecare program and mostly responded that they would repeat the experience if needed. Although the duration of the program was short-term, some caregivers may experience symptoms of burnout like anxiety, which should be taken into consideration. Despite its limitations, this study offers the possibility of improving our service portfolio by focusing on vulnerable families’ access to the program and the caregiver’s risk of burnout.

Mixed-methods implementation study of a virtual culturally tailored diabetes self-management programme for African and Caribbean communities (HEAL-D) in south London and its scaling up across NHS regions in England: study protocol

IntroductionThe National Health Service Insight Prioritisation Programme was established to accelerate the implementation and evaluation of innovation that supports post-pandemic working. Supporting this, the Academic Health Science Network and National...

The voice of memory in hospital birth: A phenomenological study

ObjectiveTo examine the perception of the hospital birth experience in women at 8 weeks and 8 months after the birth and to determine if there have been any changes in that perception. DesignThis was a prospective qualitative study with a phenomenological approach based on semi-structured, individual and in-depth interviews at 8 weeks and 8 months after childbirth as well as participant's observations. The data were transcribed and analysed thematically using ATLAS.ti 8 software. Participants43 women participated in the first interview, and 33 of those participated in the second interview. SettingDonostia University Hospital, Gipuzkoa, Spain, 2016–2017. FindingsTwo main topics emerged from the data analysis which summarize the women's perception of childbirth: (1) memory allows us to recall the experience of hospital birth in time and space; (2) some moments are specially remembered. In the second topic, three subtopics were distinguished: fondest memory: meeting the newborn for the first time; highlighted positive memories: support from partners and professionals; and the worst memories were marked by feelings of worry and fear. Conclusions and implications for practiceIn the perception of the birth experience, positive and negative memories remain in intensity and continuity for at least up to 8 months. Their creation and evocation are highly influenced by the emotional experience and the initial visual impact of meeting the newborn for the first time, which constitutes a milestone in women's lives. The emotions experienced in childbirth and during the postpartum period shape the awareness, memory and new identity of being a mother.

Thinking Time, Shifting Goalposts and Ticking Time Bombs: Experiences of Waiting on the Gender Identity Development Service Waiting List.

LOGiC-Q is a prospective longitudinal qualitative study that explores the experiences of children and young people, and their families, who have been referred to the Gender Identity Development Service (GIDS) in the UK. This paper describes the experiences of children and young people and their parents while they are on the waiting list to be seen. Semi-structured interviews were undertaken with 39 families who had been referred to GIDS and were waiting for their first appointment with the service. Both parent and child/young person were interviewed. Analysis of the anonymised interview transcripts was informed by both narrative and thematic approaches, and three predominant narratives around waiting were identified: 1. Positive experiences attached to waiting; 2. Feelings of distress and stuckness; 3. Suggestions for support while waiting. Findings from this study indicate variations in how waiting is experienced depending on the age of the child, and how distressed their body makes them feel. Young people and their parents offered suggestions for how the service could support families on the waiting list. These suggestions related primarily to ways of checking in and providing reassurance that they were at least still on the list as well as ideas about how to make the wait less distressing, rather than necessarily making the wait shorter, which was more spoken about in terms of an ideal rather than a realistic option.

A qualitative study of nursing practitioners' experiences with COVID-19 patients dying alone in Greece.

In Greece, there is still limited research on death in isolation due to COVID-19. This deserves attention because of the recent financial crisis, which profoundly impacted public health, and the high relevance of the Hippocratic tradition to the moral values of clinical practice. A prospective qualitative study using in-depth interviews with 15 frontline nursing practitioners working in a COVID-19 ward or intensive care unit (ICU) was conducted from July 2021 to December 2021. The inability of family members to say a final goodbye before, during, or after death by performing proper mourning rituals is extremely inhuman and profoundly impacts the mental health status of patients, family members, and nursing practitioners. Patients and their family members strongly desire to see each other. Epidemiology, liability, and proper nursing performance emerged as reasons for the enforced strict visitation restrictions. Participants emphasized that visitations should be allowed on an individual basis and highlighted the need for the effective use of remote communication technology, which, however, does not substitute for in-person contact. Importantly, physicians allowed "clandestine" visits on an individual basis. Nursing practitioners had a strong empathic attitude toward both patients and their families, and a strong willingness to provide holistic care and pay respect to dead bodies. However, they also experienced moral distress. Witnessing heartbreaking scenes with patients and/or their families causes nursing practitioners to experience intense psychological distress, which affects their family life rather than nursing performance. Ultimately, there was a shift from a patient-centered care model to a population-centered care model. Furthermore, we identified a range of policy- and culture-related factors that exaggerate the negative consequences of dying alone of COVID-19. These results reinforce the existing literature on several fronts. However, we identified some nuances related to political decisions and, most importantly, convictions that are deeply rooted in Greek culture. These findings are of great importance in planning tailored interventions to mitigate the problem of interest and have implications for other similar national contexts.

COVID 19 quarantine and its impact on lifestyle of diabetic patients and on their follow up in Madinah, KSA

Objectives: This article aims to discover the impact of the coronavirus pandemic lockdown on diabetes patients living in Almadina, Saudi Arabia, in terms of their lifestyle and on their follow-up. Methods: This is a cross-sectional, qualitative prospective study, a questionnaire was done to diabetic patients who underwent the quarantine period in Madinah, Saudi Arabia through an online questionnaire after getting informed consent to participation. The survey included personal, medical data, patient’s compliance to treatment and overall lifestyle manner before and during lockdown period and psychological assessment using 10 questions of the (K10) Kessler psychological distress scale. Data analysis was performed using SPSS program version 26. Results: A total of patients 350 participated in the study. 56.6% of them were females(n;198), and 43.4% were males(n:152), their ages ranged from 18 years to more than 60 years. The vast majority 96.3% of participated were of Saudi nationality, while 3.7% are non-Saudi. Participants-with types 2 Diabetes represent 31.4% while 26% suffer from type 1 diabetes and the rest they don’t which type they have. Results showed no significant differences in: (symptoms of low or high blood sugar, the extent to which a healthy diet is followed, the frequency of home blood sugar measurement) before and during the quarantine period. The rest of the variables shows a significant difference (P&lt;0.05) Conclusions: The study showed a difference in the extent of adherence to medication during the quarantine period compared to before. A reduction constructive in lifestyle habits is detected.

Implementation of a Near-Peer Surgical Anatomy Teaching Program into the Surgery Clerkship

The objective of this study was to describe theimplementation of Clinical Anatomy Mentorship Program (CAMP), a novel near-peer surgical anatomy teaching program, into the KU School of Medicine (KUSOM) Surgery Clerkship curriculum. Prospective qualitative and quantitative study. Single institution, tertiary care hospital. All M3s at KUSOM on their surgery clerkship were eligible for inclusion for the learner cohort, n = 106. A group of M4s self-identified as CAMP mentors were eligible for inclusion for the teacher cohort, n = 40. M3s have statistically significant higher self-efficacy(p < 0.001)scores after participating in CAMP. Among open-ended comments written by M3s, significant themes highlighted that CAMP taught them a much-needed refresher on anatomy, gave them an introduction to surgical anatomy, and felt peer-to-peer teaching created a safe environment to ask questions. M4 mentors reported statistically significant (p < 0.001) increases in self-efficacy andconfidence in teaching skills after teaching CAMP sessions. Among open-ended comments written by M4 mentors, significant themes highlighted that CAMP helped them develop their teaching skills and confidence in the operating room. In line with current medical education practices, KUSOM has significantly decreased anatomy in the curriculum. We responded to this shift by implementing CAMP, designed to address specific medical student needs for a surgically oriented anatomy instruction. CAMP has been effective at addressing student concerns about anatomy knowledge gaps. CAMP has enhanced self-efficacy, anatomy knowledge, and operating room exposure in M3s, and self-efficacy, teaching skills, surgical anatomy knowledge, and surgical confidence in M4s.

Gauging Stakeholder Perspectives on Artificial Intelligence in Gender-Affirming Voice Care.

As the main objective outcome measure used in gender-affirming voice care (GAVC), fundamental frequency (f0 ) often fails to accurately reflect patient perceptions of their voice. Our team developed an artificial intelligence (AI) program that provides an alternative objective outcome measure that has the potential to more accurately align with patient perceptions. To gauge stakeholder receptivity to the use of AI in GAVC before employing a novel outcome measure in transgender and nonbinary communities. This prospective qualitative study used online focus groups composed of speech-language pathologists (SLPs), transgender men (TGM), transgender women (TGW), and nonbinary (NB) individuals. Participant age, race, gender, and geographic location were recorded. Each cohort participated in a series of two focus group sessions. The first session focused on participant experiences in GAVC, whereas the second ascertained participant perspectives on the use of AI in GAVC. Transcripts of each discussion were coded using Nvivo to perform inductive thematic analysis. Seven SLPs, seven TGW, three TGM, and two NB individuals (mean [range] age, 35.5 [26-48] years) participated. Transgender and nonbinary participants were generally amenable to the technology, whereas SLPs were more hesitant about its use. Positive findings included appreciation for AI as an objective outcome measure and enthusiasm for its potential to longitudinally track progress. Hesitations concerned the actionability of using the AI and unease about the black box nature of the AI's analysis. Transgender and NB individuals were receptive to the use of AI technology in GAVC, whereas SLPs were more apprehensive about using AI. NA Laryngoscope, 133:1698-1705, 2023.

Peer Assisted Learning; The Perspective of Peer Tutors

Objective: To determine the perspective of PAL tutors regarding the effectiveness of PAL in promoting knowledge and skills among the undergraduate students using small group discussions in an integrated module. Methodology: A prospective qualitative method study was conducted at Rawal Dental College, Islamabad, from April to June, 2021, for 12 weeks. Students from the second year of BDS (n = 50) were divided into five small groups. Five students’ volunteers were chosen from those who completed the previous units with more than 80% summative assessment score and with good communication skills. The group discussion centered on the application of core knowledge and skills in pathology. Responses from the tutors for the qualitative data were obtained using in depth one-on-one semi-structured interviews with audio recorded. The verbatim in the form of audio and notes were transcribed, and the qualitative analysis was performed by two independent investigators, generating codes, themes, and subthemes. Results: The results showed the comprehensive understanding of the insights of tutors and the motivational elements for achieving academic goals and improving teamwork and teaching skills. Many factors encouraged their participation as tutors, including the acquisition of knowledge and leadership skills. The students felt that their compassionate attitude encouraged active participation by the fellow students, increasing their confidence and learning. The students perceived that they had attained essential attributes that would benefit them in professional life in the future. Conclusion: The students enjoyed the Peer-assisted learning experience and recognized its importance for their academic and professional development. While learning in a relaxed environment, the students achieved their basic learning goals, developed leadership skills, improved communication skills, and gained confidence. Keywords: Peer Group, Integrated curriculum, Near-Peer tutoring. Â

Reasons for individuals' COVID-19 vaccine hesitations and changing decisions over time: A longitudinal qualitative study

ObjectiveCOVID-19 is a serious public health problem. Therefore, it is important to vaccinate the community. This study was aimed at examining the reasons for individuals' COVID-19 vaccine hesitations, and decisions that have changed over time. Material and methodsThis was a prospective longitudinal qualitative study. ResultsConfidence, fear, conspiracy theories, belief, and social pressure play a role in vaccine hesitancy. The most important factor in the changing decisions of individuals who are hesitant about vaccination is pressure. Confidence and fear also lead to a change of decision. However, it was remarkable that most of the participants who were vaccinated due to pressure did not want to be revaccinated. ConclusionsGovernments, media, vaccine companies, health professionals, and scientists should act together to increase the vaccination rates of individuals.

“It is the future. Clinical pharmaceutical care simply has to be a matter of course.” - Community pharmacy clinical service providers' and service developers’ views on complex implementation factors

BackgroundWhile there is a lot of documented evidence about the clinical and cost effectiveness of pharmacists’ role extensions there is an inherent gap between service development and implementation.Objective(s): This study aims to better understand the complex factors that influence the implementation of clinical pharmacy services from both the perspective of the community pharmacy service providers and service developers. MethodsA prospective qualitative interview study using purposive sampling of twelve service developers and twelve community pharmacy service providers from across all nine Federal States of Austria. The validated and piloted interview guide contained questions and prompts on role perceptions, attitudes, experience, implementation barriers, training needs and measures identified to strengthen clinical pharmacy provision in community pharmacy. Verbatim quotes were independently mapped to the Framework for the Implementation of Services in Pharmacy (FISpH) by two researchers. Results24 Interviews were carried out. Data saturation was achieved. There is a great deal of enthusiasm to develop the remit of clinical pharmacy services. It is seen as important to ensure the future survival of the profession. Service developers are more positive and confident in the implementation success and pharmacists’ skills than providers. Clear mandates for politics, academia and individual pharmacists have been discussed to affect change. ConclusionsAustrian pharmacists are facing the same well documented challenges as many other healthcare systems only with more urgency. The development of a clinical pharmacy service framework; education accreditation standard and a well-supported continuous professional development system are considered key to bring about the necessary culture shift.

Faculty Development for Academic Emergency Physicians: A Focus Group Analysis.

Objectives: The objective is to explore academic emergency medicine physicians’ exposure to and needs regarding faculty development.Methods: We conducted a prospective qualitative study of Society for Academic Emergency Medicine members in 2018 using focus groups selected by convenience and snowball sampling. One facilitator ensured representative engagement and responses were transcribed in real-time by an assistant after obtaining verbal consent. Results were analyzed using a grounded theory approach with a constructivist perspective. Thematic analysis was refined using the constant comparative method.Results: Sixteen physicians participated in the focus groups, representing a diverse group of perspectives. Six themes emerged about unmet needs in faculty development: knowledge and skills, relationships, specific programs or resources, and professional benefits.Conclusions: Members of a national academic society identified three areas of focus important to developing academicians in emergency medicine: content for faculty developers, relationship-building among members, and support from the organization as a “professional home.” Academic societies can use this to guide future programming.

Reasons for individuals' COVID-19 vaccine hesitations and changing decisions over time: A longitudinal qualitative study

ObjectiveCOVID-19 is a serious public health problem. Therefore, it is important to vaccinate the community. This study was aimed at examining the reasons for individuals' COVID-19 vaccine hesitations, and decisions that have changed over time. Material and methodsThis was a prospective longitudinal qualitative study. ResultsConfidence, fear, conspiracy theories, belief, and social pressure play a role in vaccine hesitancy. The most important factor in the changing decisions of individuals who are hesitant about vaccination is pressure. Confidence and fear also lead to a change of decision. However, it was remarkable that most of the participants who were vaccinated due to pressure did not want to be revaccinated. ConclusionsGovernments, media, vaccine companies, health professionals, and scientists should act together to increase the vaccination rates of individuals.

He Tamariki Kokoti Tau: Whānau of preterm Māori infants (pēpi) reflect on their journeys from birth to first birthday

ABSTRACT An infant arriving early disrupts the birth imaginary of whānau (family collectives) and situates them in unfamiliar health environments that may not be culturally safe. Regaining a sense of familiarity enables whānau to cope with their unexpected preterm trajectory. He Tamariki Kokoti Tau: Babies Born Prematurely was the first Kaupapa Māori prospective qualitative longitudinal study to explore these trajectories, walking alongside whānau from birth to first birthday. This interpretative phenomenological analysis explores the final ‘first birthday’ interviews with 16 whānau. Concerns that had been raw in early days of neonatal intensive care carried over – frustrating whānau yet strengthening their resolve to support each other. Whānau described how they enacted resilience together, with their whānau collective including health practitioner champions who became ‘like whānau’ by virtue of their culturally responsive care. While pēpi (infants) continued to experience health issues, whānau felt hopeful for the year ahead. They expressed love, joy, and pride for their pēpi as the centre of their whānau. Whānau are experts of their pēpi, and healthcare champions who recognise this and promote whānau tino-rangatiratanga (autonomy) make a world of difference. Health services can learn from these whānau, about how to better support preterm care pathways for Māori.