Proceedings of the 2018 of Medical Devices Conference DMD2018 April 9-12, 2018, Minneapolis, MN, USA

DMD2018-6915 Downloaded from http://asmedigitalcollection.asme.org/BIOMED/proceedings-pdf/DMD2018/40789/V001T10A009/2788243/v001t10a009-dmd2018-6915.pdf by guest on 26 September 2021

CONTEXTUAL APPLIED TO WEARABLES THAT FACILITATE KANGAROO CARE BY INTERVIEWING MOTHERS OF HOSPITALIZED INFANTS

Abigail R. Clarke-Sather Kelly Cobb Department of Mechanical & Industrial Eng. Department of & Apparel Studies University of Minnesota Duluth University of Delaware Duluth, Minnesota, USA Newark, Delaware, USA

Catherine Maloney Hannah Young Department of Mechanical & Industrial Eng. Department of Fashion & Apparel Studies University of Minnesota Duluth University of Delaware Duluth, Minnesota, USA Newark, Delaware, USA

BACKGROUND KC is an early caregiver-infant behavior that improves When considering how to design medical devices infant motor, cognitive, and social-emotional development considering the needs of the patient and hospital staff may including for infants at risk. KC improves emotional seem sufficient. Hospitalized infants are patients who cannot regulation, alertness, and neurodevelopmental outcomes [1]. speak or advocate for their needs; the parents and the hospital KC provides a calm and soothing environment that reduces staff caring for infant patients have different roles that together stress, positions the infant to encourage motor and mental are integral to an infant’s recovery. Figure 1 shows how development, and allows infants to sleep more readily and mothers, nurses, and infants form a system of care to promote deeply [2], [3]. KC is shown to encourage breastfeeding infant patient healing. In particular caregiver behaviors such through increasing mothers’ milk production, rates of as kangaroo care (KC), are dependent upon the involvement of breastfeeding exclusivity, and breastfeeding duration [3]. KC family. KC, defined as bare skin-to-skin contact between an has been shown to improve sleep and reaction to pain during infant and an adult caregiver, is usually done chest-to-chest. procedures [4]. The design of wearables for the caregivers holding the infant Specifically care in a neonatal intensive care unit (NICU) patient can make KC easier and be part of wearable medical requires many resources—nursing, equipment, financial, and device design that improves infant patient outcomes. emotional [5]. Parents and infants in NICUs experience stress and may have difficulty bonding [2]. KC improves parent child bonding and reduces parental stress [2], [3]. KC best practices include: being held skin to skin by Infant mothers as soon as possible after birth; babies be held skin to Patient skin by mothers continuously, and in the case of intermittent holding that babies be held for at least one hour [6]. Medically stable infants can benefit from the start of KC within 24 hours of birth, resulting in statistically significantly shorter hospital Nurse stays [7]. Mother Significance: The age at which premature infants are Education (Hospital (Family) treated and survive has become younger in the U.S. over the Child advocacy Staff) past decades [8]. The gestational age of premature babies that Communication are treated varies between hospitals; a study of 24 hospitals between 2006 and 2011 showed that of infants born at 22 Figure 1: Infant patient care team and roles

1 Copyright © 2018 ASME weeks gestational age receiving active treatment 23.1% survived and 9% survived with minimal health setbacks [9]. The rates of infant prematurity in the U.S. has decreased from 12.8% to 9.8% over the past decade [10], [11]. However, 7.9 per 1000 babies born in 2012 received care in NICUs [12] and nearly 4 million babies were born in the U.S. in 2010 [13]; thus, it can be presumed that hundreds of thousands of mothers Downloaded from http://asmedigitalcollection.asme.org/BIOMED/proceedings-pdf/DMD2018/40789/V001T10A009/2788243/v001t10a009-dmd2018-6915.pdf by guest on 26 September 2021 in the U.S. cared for infants who have received care in NICUs in the U.S. since 2010. Existing KC assists such as garments for mothers (e.g. NuRoo, Hudlo baby, milk & baby, Precious Image) and preterm baby carriers available commercially (e.g. K’tan, Uchi) do not work well for use in the NICU. Commercially available garments do not easily allow the infant to enter KC due to the tubes that connect the infant to medical devices. Discreet skin exposure for KC, breastfeeding and pumping breastmilk is difficult for mothers with commercially available garments including easy garment donning and doffing in a confined . Figure 3: Demographics of interviewed mothers The aim of this project is to understand mothers’ perspectives on doing KC in hospitals. Hospitals are unique Only the KC results are discussed in this paper. 12 of the environments where KC barriers may be different than in other interviewers were conducted in English, 1 of the interviews environments. These preliminary findings explore limitations was conducted in Spanish. Mothers were recruited via mother to these important early caregiver behaviors in the hospital. support groups either online or in person. These interviews were transcribed and then coded using grounded theory METHODS methodology [16]. Interview data was transcribed, systematically coded for themes with descriptive statistical Infant hospital care involves a complex system of actors analysis performed in MS Excel. who work to improve a child’s health outcomes. Contextual Design theory stresses the importance of gathering feedback from end users while working. Incorporating feedback from RESULTS the workers’ user preferences into the design of systems is Ten of the 13 mothers interviewed had cared for their considered essential for success [14]. One of the approaches children in the NICU. Their children ranged from 24 weeks to for studying and incorporating user feedback into design is full term (defined as 36 weeks 6 days) gestational age (Fig. 2). through interviews of end users [15]. The mother-baby-nurse Seven mothers mentioned where their children were system of medical care was studied from the perspective of hospitalized representing 5 different hospitals’ NICUs and 6 mothers to investigate what impedes and supports mothers’ different hospitals. Figure 3 shows demographic information work of KC, breastfeeding, and pumping breastmilk in the of the interviewed mothers. care of hospitalized infants. The themes that arose in the interviews were how: nurses, 13 mothers from the U.S. East Coast were interviewed in medical condition, and privacy influenced KC. How KC person (n=12) or via skype (n=1) from March to August 2017 influenced mother-child bonding and breastfeeding emerged. about their experiences with KC, breastfeeding, and pumping Each mother was asked about clothing she used for KC. breastmilk in the NICU or hospital by 6 different interviewers. Nurses: Four mothers described NICU nurses as gatekeepers to kangaroo care in terms of nurse attitudes toward KC, hospital schedule, and mothers’ and children’s medical conditions. Regarding nurse attitudes, a mother noted “some of the nurses are more inclined to push you to do the kangaroo care than other nurses are.” Nurses affected when, how, where, and if KC was done. Two mothers mentioned that they needed to conform to the hospital schedule in terms of hours or activities. One mother described the hospital schedule as 4-hour blocks. Another mother mentioned the repetition of activities KC, pump breastmilk, wait. The schedule that NICU nurses and other hospital staff kept determined mothers’ ability to do KC. One mother commented on the different medical condition of her child and attitudes of nurses in different

Figure 2: Infant demographics (w=weeks, d= days) hospitals that helped make KC possible; “I was not able to

2 Copyright © 2018 ASME hold him at all at [Hospital 1], I think he was just too unstable, but I mean at [Hospital 2] they were amazing, they would do anything it took to get me to hold him.” Hospitals likely reinforce different attitudes among nurses towards KC. One mother mentioned that it was difficult to argue with the NICU nurses. Two mothers mentioned that getting to hold their child felt like a fight. As one mother commented on KC Downloaded from http://asmedigitalcollection.asme.org/BIOMED/proceedings-pdf/DMD2018/40789/V001T10A009/2788243/v001t10a009-dmd2018-6915.pdf by guest on 26 September 2021 in the hospital “some nurses were more comfortable with … me being a little more independent, some nurses … didn’t want me to … take him out. … it just depended on them [the nurses] which was kind of annoying.” Some mothers viewed the hospital and/or its staff as hindering their ability to do KC. Figure 4: Number holds per day and hold duration (hours) Medical condition: Infant medical condition made KC total KC time increased as their child’s health condition challenging. Two mothers mentioned their children’s medical improved. condition specifically as a barrier to KC. Three mothers Privacy: Mothers’ opinions about privacy during KC mentioned the following that their infants were connected to differed. Two mothers expressed a lack of concern about as making KC more difficult: exposing their skin, yet an awareness that others, including • nasogastric tube down the nose (for feeding); nurses, might be uncomfortable with their nakedness might • umbilical catheter; differ from their own. One mother who had cared for multiple • pulse oxygenation monitor on the toes; children in the NICU expressed this sentiment in this way “at • wires and cords; and this point I was like I don’t care, I am going to do what I want • alarms that sounded when cords detached. and you can wait or come talk to me while I am doing this.” The equipment connected to their children or the alarms These mothers, despite their own comfort with exposing their that sounded when that equipment detached made it difficult skin, noticed others’ (including nurses’) lack of comfort with physically and emotionally to do KC. KC is uniquely their nakedness. Three other mothers expressed their challenging in the hospital because of the barriers that this discomfort with KC when exposing themselves out in the open equipment poses; one mother mentioned that she could not put in a NICU or in public. Only one mother did KC in public her child down her shirt to do KC because of the cords. The after her child left the hospital. cords and her clothing choice did not work to allow KC. Mother-child bonding: Nearly all of the mothers Mothers holding hospitalized infants contend with unique expressed how positive they felt when holding their children challenges posed by the life supporting equipment that their in the hospital (one mother did not respond). As one mother children are connected to in contrast to KC in public or stated "when they separated him from me, he would start private. crying as if he was connected to my chest." However, two Mother’s as well as infant’s health affected the ability to mothers expressed negative emotions related to the preterm do KC. One mother stated that she could not physically hold birth and hospital intervention needed as well; as one mother her child while she was healing. Another mother mentioned said “it felt like we were being cheated of a normal mother- her baby being brought to her while she sat for the first few baby bonding experience.” Negative feelings from mothers weeks. Four mothers mentioned the time it took until they first about preterm birth are common. held their babies; 8 hours, 2 days and 7 days. The mother’s KC helped mothers feel a positive connection to their health condition affected KC. Mothers’ and infants’ health child and a sense of engagement in their child’s care. One both affect when and how KC can happen; nurses make KC mother commented that when she and the father did KC they possible for both parties. “felt that they were contributing to their care.” Parents may Nine mothers responded about the frequency and duration lack secure attachment with their hospitalized children. Often of holding their hospitalized infants (Fig. 4). Three mothers parents simply cannot be present when their infant is reported that early on in their children’s’ hospital stays they hospitalized; one mother mentioned needing to take care of an could hold them only once a day. Four mothers mentioned older child, another mother mentioned that the father’s work meant that after a while he was not able to come to the hospital. Breastfeeding: Two mothers identified that KC helped make pumping breastmilk easier. Developing and maintaining a supply of breastmilk can be difficult for a mother who has only pumped and never breastfed her child because of the child’s health. Two mothers identified KC as helping their supply and pumping of breastmilk. One mother stated; “A lot of times I would hold them and then get let-down for

3 Copyright © 2018 ASME breastmilk, because holding turns on hormones - it physically made my body want to nurse them.” KC has been shown to promote breastfeeding [3]. Clothing: The mothers interviewed were split on their opinion of whether clothing had an impact on their ability to do KC (Fig. 5). However all but two mothers mentioned choosing specific types of clothing to wear to make KC Downloaded from http://asmedigitalcollection.asme.org/BIOMED/proceedings-pdf/DMD2018/40789/V001T10A009/2788243/v001t10a009-dmd2018-6915.pdf by guest on 26 September 2021 possible in the hospital. Also, the majority of mothers described planning what clothing to wear in advance of going to the hospital in order to be able to do KC. The mothers’ described actions demonstrate that clothing impacted their ability to do KC. Four mothers described simply taking off Figure 6: No. mothers used clothing types for KC in hospital their clothes in the NICU in order to be able to do KC. INTERPRETATION These results cannot be taken as a representative sample of American mothers’ opinions of KC because of the small sample size, its regional geographic limitations, and the racial/ethnic and age range makeup differences from the entire U.S. However, this small number of interviews can elicit themes that may emerge in interviews with a wider sample of mothers. Nurse buy in is essential for making KC happen in the hospital. Nurses move babies in the NICU, often placing a child onto the mother for KC. KC is not possible without nurses being on board. Different hospitals create environments that support different abilities of nurses to assist KC. Mothers expressed a feeling of lack of power in relation to nurses. From these mothers’ perspective, nurses controlled access to their children. Mothers also expressed conflict with nurses when trying to advocate for access and support needed to hold Figure 5: Clothing’s impact on KC in the hospital their children. Nurses act as the educators about and Figure 6 shows the types of clothing or approaches to gatekeepers for KC. Whether nurses are aware of it or not they dressing used by mothers for KC in the hospital. Button down hold the power of control in the mother-child relationship in shirts were what the greatest number of mothers mentioned as the hospital. Mothers may not know how or may not try to making kangaroo care feasible. Tank tops, including nursing advocate for KC within the hospital because of mother’s or breastfeeding tank tops, were also used by several (5) perceived power relationship. More detailed study of mothers. About the same number of mothers used hospital perceptions in this working relationship between mothers and gowns or a similar garment such as a robe for KC. One mother nurses is needed in future interviews to help improve KC in specifically mentioned that clothing made for breastfeeding or hospitals. nursing worked for KC. Three mothers used the so called “two The medical condition of infant patients can make KC shirt method.” In this method, a loose shirt that can be pulled very challenging. The equipment that is supporting their care up or out of the way is worn over another shirt that can be can impede KC physically or frighten mothers from doing KC pulled down; the two shirt method is a layering approach that because of equipment alarming. Not all babies can be held is most often used to facilitate ease of breastfeeding. By the because of their medical condition. A baby may be deemed diversity of garments used by mothers, more than one dressing unfit for KC because of the condition of their heart, breathing, approach or type of garment works well for KC in the hospital. oxygen saturation , and temperature amongst other KC in Public: After being asked about their experiences concerns [3]. Hospitalized infants who experience KC have in the hospital doing kangaroo care, nine mothers were asked the same level of survivorship as those that have not had KC if clothing impacted whether they did kangaroo care in public [7]; however movement of a very sick baby can result in or private. However, only one of the nine mothers did desaturation of blood oxygen levels, fluctuations in blood kangaroo care ever in public. Four mothers did not feel pressure levels [3], and even accidental extabation of comfortable enough being possibly exposed in public to do breathing tubes. The benefits of KC to infants and parents kangaroo care so only did it in private where clothing did not support its promotion in hospitals. matter (the other four mothers did not respond to this KC best practices were not always followed. For 3 out of question). the 4 mothers who mentioned the time to first hold, that time was greater than the 24-hour period recommended. This

4 Copyright © 2018 ASME recommendation stems from the statistically significant premature infants,” Dev. Psychobiol., vol. 43, no. 2, pp. 109–119, reduction in hospital stay length for infants who receive KC 2003. [7]. For half of the 8 mothers who responded about the [2] S. M. Ludington-Hoe, “Kangaroo Care as a Neonatal duration of time they held their babies that duration was less Therapy,” Hot Top., vol. 13, no. 2, pp. 73–75, Jun. 2013. than the 1-hour time period recommended. Presumably the [3] S. M. Ludington-Hoe, “A Clinical Guideline for Implementation of Kangaroo Care With Premature Infants of 30 or medical situations of the mother and child (and the other

More Weeksʼ Postmenstrual Age,” Adv. Neonatal Care, vol. 8, no. Downloaded from http://asmedigitalcollection.asme.org/BIOMED/proceedings-pdf/DMD2018/40789/V001T10A009/2788243/v001t10a009-dmd2018-6915.pdf by guest on 26 September 2021 patients present at the time) influenced these lengths of time. supplement, pp. S3–S23, 2008. Ensuring that parents and nurses are aware of KC best [4] J. Baley, “Skin-to-Skin Care for Term and Preterm Infants practices may improve health gains. in the Neonatal ICU,” Pediatrics, vol. 136, no. 3, p. 596, Sep. 2015. Many NICUs are moving to single bed private rooms. [5] S. Matricardi, R. Agostino, C. Fedeli, and R. Montirosso, However, this change does not adequately address privacy for “Mothers are not fathers: differences between parents in the KC because the number of hospital staff coming in and out of reduction of stress levels after a parental intervention in a NICU,” the room may more critically impact a mother’s feeling of Acta Paediatr., vol. 102, no. 1, pp. 8–14, 2013. privacy than the space itself. One mother commented “it’s [6] K. Nyqvist et al., “Towards universal Kangaroo Mother uncomfortable to do it [kangaroo care] in the hospital because Care: recommendations and report from the First European there are a lot of doctors and nurses around - wasn’t much conference and Seventh International Workshop on Kangaroo Mother Care,” Acta Pædiatrica, vol. 99, no. 6, pp. 820–826, 2010. privacy.” A sense of privacy is felt by mothers and is related to [7] A. Conde-Agudelo, J. L. Díaz-Rossello, and J. Belizan, others’ perceptions of mothers. “Kangaroo mother care to reduce morbidity and mortality in low Traditionally the patient is the end user considered for birthweight infants,” Cochrane Database Syst Rev, vol. 2, no. 2, p. medical device or wearable design. For infants, parents and CD002771, 2003. mothers in particular are an essential part of their hospital [8] K. Benham, “never let go Part one: Lost and Found,” care. Important early infant caregiver behaviors face unique Tampa Bay Times, Tampa, FLorida, 06-Dec-2012. challenges for hospitalized infants. Thus, in designing devices [9] M. A. Rysavy et al., “Between-Hospital Variation in and wearables to make KC easier, understanding the lived Treatment and Outcomes in Extremely Preterm Infants,” N. Engl. J. experience of infant caregivers, i.e. mothers, working to care Med., vol. 372, no. 19, pp. 1801–1811, May 2015. for their children in the hospital is essential to have insight [10] J. A. Martin and Mi. J. K. Osterman, “Preterm Births — into what to design. In order to be engaged with a contextual United States, 2006 and 2010,” Center for Disease Control (CDC), Atlanta, Georgia, Nov. 2013. design process for infant medical care, acknowledging the [11] March of Dimes, “Fighting premature birth,” march of mother-baby-nurse system of infant care in hospitals is dimes, 2017. [Online]. Available: important. Engaging with and reaching an understanding of https://www.marchofdimes.org/mission/prematurity-campaign.aspx. the viewpoint of all actors in the system, regardless of who is [Accessed: 19-Oct-2017]. formally assigned the role of patient and professional, is [12] W. Harrison and D. Goodman, “Epidemiologic trends in necessary for truly insightful and impactful design for neonatal intensive care, 2007-2012,” JAMA Pediatr., vol. 169, no. 9, improved infant health. pp. 855–862, Sep. 2015. The results from these interviews will be used to inform a [13] J. A. Martin, B. E. Hamilton, S. J. Ventura, M. J. Osterman, process to create garments, devices, and E. C. Wilson, and T. J. Mathews, “Births: Final data for 2010,” policy recommendations that facilitate KC in the NICU by Centers for Disease Control and Prevention (CDC), Atlanta, Georgia, overcoming identified barriers to and increasing identified 1 61, Aug. 2012. [14] H. Beyer and K. Holtzblatt, “Contextual design,” support for mothers. interactions, vol. 6, no. 1, pp. 32–42, 1999. [15] M. B. Privitera, “Contextual Inquiry Methods,” in ACKNOWLEDGMENTS Contextual inquiry for medical device design, First edition.., Thanks to Michele Lobo, Melissa Melby, Lindsay Naylor, Amsterdam ; Boston: Amsterdam ; Boston : Elsevier/AP, Academic and Darling Sanchez for your hard work and guidance. Press is an imprint of Elsevier, 2015, pp. 47–71. [16] C. Geertz, “Thick description: Toward an interpretive REFERENCES theory of culture,” Read. Philos. Soc. Sci., pp. 213–231, 1994. [1] R. Feldman and A. I. Eidelman, “Direct and indirect effects of breast milk on the neurobehavioral and cognitive development of

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