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Introduction: Adults Born Very Preterm (ABP) are an underperceived but steadily increasing patient population. It has been shown that they face multiple physical, mental and emotional health problems as they age. Very little is known about their specific health care needs beyond childhood and adolescence. This article focuses on their personal pers...
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Introduction
Residents in facilities such as nursing homes (NHs) are particularly vulnerable to COVID‐19. A national survey was carried out to collect information on the spreading and impact of SARS‐CoV‐2 infection in nursing homes, and on how suspected and/or confirmed cases were managed. We carried out a survey between March 25, 2020, and May 5,...
Citations
... We are aware of just one other published qualitative study about the experiences of adults born preterm. 12 Because most adult healthcare providers have yet to acknowledge and factor this experience into patient care, individuals born preterm are finding alternative avenues to be seen. Adults born preterm report seeking online community and support, connecting globally with people over shared early life experiences, while simultaneously making their needs and identities known. ...
... Globally each year this accounts for approximately 15 million persons born early reaching adulthood [2]. Little is known however about how individuals born early perceive the impact of prematurity on their lives, and what meaning they assign to it [3][4][5][6]. ...
... Multiple neonatal morbidities are associated with preterm birth, with increased severity of illness linked with earlier gestational ages and lower birth weights. Preterm birth is associated with an increased risk for later adult non-communicable [7][8][9] conditions such as cardiovascular disease [10,11], respiratory limitations [7][8][9], behavioral and mental health concerns [12], yet preterm birth status is rarely a component of adult health care [3,5,13]. In adulthood, preterm birth is correlated with decreased income and employment [4,14,15]. ...
... Firsthand accounts provide important information for parents, families, clinicians, educators, and researchers involved in caring for and educating those directly impacted. The voices of adults born preterm are conspicuously absent from preterm outcomes research [5,6]. The purpose of this study was to describe, interpret, and understand how adults born preterm perceive prematurity to have affected their lives. ...
Background
Tremendous medical advancements over the last several decades have supported the survival of younger and sicker newborns. Substantial quantitative research exists about health and developmental outcomes following preterm birth, however, limited published literature has explored what this experience means to the survivors.
Aim
The purpose was to describe, interpret and understand how adults born preterm perceive prematurity to have affected their lives.
Study design
Qualitative thematic analysis.
Methods
Semi-structured interviews were conducted with 33 adults born preterm from the RHODĒ Study, a longitudinal preterm birth cohort. A cross-section of participants with high and low early life medical and environmental risk was interviewed. Data were analyzed using a constructionist method of latent theme analysis.
Results
From the data, 3 themes were identified: 1) My parents call me their miracle, 2) It's not a big deal, I'm the same as everyone else, 3) I've overcome a lot. Themes represent a continuum of experience, from positive to neutral to negative. Common life experiences of family, education, friends, and health are subthemes that help to illuminate how participants assign meaning to their prematurity. Meaning was linked to how typical or not participants perceive their health, learning and friends compared to peers.
Conclusion
Perceptions about prematurity and adversity are influenced by the ways parents and families represent prematurity in shared stories and actions. These findings should inform future research with adult survivors of prematurity. Participants identified ongoing need for support and advocacy, particularly from healthcare and education communities.
... In addition, there are also other visual impairments Metabolic, cardiovascular, and renal (cardiometabolic) risks in adults born preterm* *Here using the example of diabetes mellitus, propensity to arterial hypertension, coronary heart disease, and chronic kidney disease. In the Swedish study on coronary heart disease, the increase in risk was even more marked if the subgroup of already somewhat older subjects (30)(31)(32)(33)(34)(35)(36)(37)(38)(39)(40)(41)(42)(43) was considered separately and if the less premature (late) preterm infants (< 37 GW) were included. HR, hazard ratio; CI, confidence interval; LY, life years; OR, odds ratio; PY, person years; FTN, full-term neonate; GW, gestational weeks; vs.,versus; →, observation period Source (14) following preterm birth, for example, of visual acuity, convergence, and stereopsis, which-together with the disorders of central nervous visual processing recently observed more frequently-may be contributing, undetected, to presumed cognitive deficits (25, e26, e27). ...
Background:
Advances in neonatology now enable increasing numbers of very low birth weight neonates (<1500 g) to survive into early adulthood and beyond. What are the implications for their long-term care?
Methods:
Selective literature search on the outcome of very low birth weight neonates in adulthood ("adults born preterm").
Results:
Robust data are available on the pulmonary, metabolic, cardiovascular, renal, neurocognitive, sensory-visual, social-emotional, mental, reproductive, and musculoskeletal long-term risks. On the somatic level, elevated rates have been documented for asthma (odds Ratio [OR] 2.37), diabetes mellitus (OR 1.54), and chronic renal disease (hazard ratio [HR] 3.01), along with the cardiovascular and cerebrovascular sequelae of a tendency toward arterial hypertension. On the psychosocial level, the main findings are deficits in romantic partnerships (OR 0.72) and a lower reproduction rate (relative risk [RR] male/female 0.24/0.33). The affected women also have an elevated risk of preterm delivery.
Conclusion:
A risk profile with both somatic and psychosocial aspects can be discerned for adults who were born prematurely, even if some of these risks are present in low absolute numbers. As the ability to compensate for latent deficits declines with age, such adults may suffer from "premature aging as the late price of premature birth." A holistic approach to care with personalized prevention strategies-which for most of them was discontinued at discharge from pediatric follow-up-therefore seems appropriate in adulthood as well.
... Parent-led organisations have started advocating for greater recognition of and research into the ongoing impact of preterm birth Ogilvy et al., 2017). Adults born preterm report that health professionals beyond those involved in early-life care are often unaware of their health needs, highlighting the need for better education on preterm birth for health professionals working with adolescents and adults (Perez et al., 2020). Considerably more work is needed to identify fruitful interventions or support strategies to ensure that preterm-born children achieve their potential. ...
Background
Over a decade after the landmark ‘Born too Soon’ report, preterm birth remains a leading cause of under-five mortality. Addressing its global burden is key to meeting United Nations Sustainable Development Goal 3; to end preventable deaths of newborns and children by 2030. We conducted a landscape analysis to explore the types of organisations addressing preterm birth, highlight the scope of interventions and initiatives, and identify gaps and opportunities for shared learning.
Methods
We combined google searches with citation searching, and opinion of experts in child health, to identify the major global stakeholders working to improve outcomes of preterm birth, with evidence of activity since 2012. We conducted a thematic analysis and narrative synthesis of key stakeholder websites to categorise their functions and priorities, and the types of interventions they were implementing.
Results
A total of 38 key organisations and 28 interventions were derived from the searches. Organisations were thematically grouped into knowledge sharing (n = 15), knowledge production (n = 12), funders (n = 6), legislation and advocacy (n = 15), implementer (n = 14) and network organisations (n = 11). Interventions covered a wide scope of functions including education (n = 11), research (n = 10), resources (n = 7), legislation (n = 2), and health systems (n = 2) interventions. The majority of global stakeholders were funded from and headquartered within high-income settings.
Discussion
There is scope for significant learning across global stakeholders, in particular to support carers in low-resource settings. Further opportunities for impact include a need for community-based initiatives and whole systems approach that address the long-term needs of preterm babies and their families, particularly in low- and middle-income countries (LMIC) settings. Greater knowledge production and funding from LMICs is needed to create contextually relevant resources and address implementation challenges.
Aim:
To explore how young adults thought that being born preterm had affected their lives.
Methods:
Adults participants of a research cohort were questioned about their perspectives. Answers were analyzed using mixed methods.
Results:
Forty-five participants evaluated their health at median score of 8/10. When asked about the meaning of being born preterm, 65% had positive self-centered answers, invoking two main themes: being stronger/"a fighter"/more resilient and being a survivor/chosen; 42% also reported negative themes, such as having health problems and a difficult start. All heard about their prematurity from their parents, 55% with positive child-centered or healthcare system-centered themes, 19% with neutral themes; 35% also heard negative parent-centered themes (tragic experience, guilt, mother's health). When asked which words were associated with prematurity, participants mainly chose positive words for themselves and their family, but more negative words for how the media and society depicted prematurity. Answers were not correlated with adverse objective health measures.
Conclusion:
Participants evaluated their health in a balanced fashion. Preterm born adults often feel that they have experienced positive transformations as a result of their traumatic start. They often have feelings of gratitude and strength, independent of health problems.
The aim of this quality improvement project was to improve and standardise pain and stress management practices and processes within a 34-bed Level III neonatal unit. Results demonstrated a statistically significant improvement in staff perceptions regarding education and training specific to traumatic stress as well as pain and stress assessment and management practices (p < 0.05). Building more confidence and competence with staff to utilise breastfeeding and skin-to-skin practices as primary non-pharmacologic interventions during painful and stressful procedures is a future opportunity for continued quality improvement. As NICU practice continues to evolve, clinicians must not lose sight of their role as advocates in meeting the human needs of those they serve within this highly technological environment. Pain and stress assessment and management is a first step in providing loving, compassionate, trauma informed, developmental care.
Aim:
This study assessed the self-reported health perception and use of healthcare by adults born very preterm before 30 weeks of gestation.
Methods:
The participants were part of a cross-sectional observational study that assessed the global health of young adults aged 18-29 years born very preterm in Quebec, Canada. Health perception was explored from 2011-2016 using the second Short-Form 36 Health Survey (SF-36v2) and objective health measures were obtained. Further in-depth open-ended questions were asked in 2018.
Results:
The 101 preterm subjects had similar perceptions of their health to 105 term-born controls, according to the SF-36v2, despite significantly more adverse health conditions. Their healthcare use was similar. However, the later in-depth questionnaire showed that 23% of 45 preterm subjects and 3% of 34 term-born subjects perceived their health as poorer than the general population. Major factors that could improve their respective health were lifestyle habits (74% versus 81%) and eliminating specific adverse symptoms (52% versus 27%). Only 10% of preterm individuals had been asked about their perinatal history by physicians.
Conclusion:
Adults born very preterm said their health was poorer than the general population and identified specific factors that should be addressed during routine health monitoring.
I was born preterm at 26 weeks of gestation in 1992 and I spent three months in the hospital. At discharge, my parents were told that my lungs could be permanently impaired (due to bronchopulmonary dysplasia), but that it should not prevent me from doing my everyday life activities. They were also warned about adverse neurological outcomes and learning difficulties, so they happily welcomed each developmental milestone I reached, never knowing when they could be sure that I would no longer be at risk.
