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Connection Versus Disconnection: Examining Culturally Competent Care in the Neonatal Intensive Care Unit a
David B. Nicholas PhD RSW , Leonora Hendson MBBCh MSc FRCP(C) b
& Misty D. Reis MN RN NP
c
a
Faculty of Social Work , University of Calgary, Central and Northern Alberta Region , Edmonton , Alberta , Canada b
University of Alberta, Pediatrics , Edmonton , Alberta , Canada
c
Click for updates
Alberta Health Services-Stollery Children's Hospital , Edmonton , Alberta , Canada Published online: 31 Jan 2014.
To cite this article: David B. Nicholas PhD RSW , Leonora Hendson MBBCh MSc FRCP(C) & Misty D. Reis MN RN NP (2014) Connection Versus Disconnection: Examining Culturally Competent Care in the Neonatal Intensive Care Unit, Social Work in Health Care, 53:2, 135-155, DOI: 10.1080/00981389.2013.864377 To link to this article: http://dx.doi.org/10.1080/00981389.2013.864377
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
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Social Work in Health Care, 53:135–155, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2013.864377
Connection Versus Disconnection: Examining Culturally Competent Care in the Neonatal Intensive Care Unit DAVID B. NICHOLAS, PhD, RSW Downloaded by [Erciyes University] at 23:21 19 December 2014
Faculty of Social Work, University of Calgary, Central and Northern Alberta Region, Edmonton, Alberta, Canada
LEONORA HENDSON, MBBCh, MSc, FRCP(C) University of Alberta, Pediatrics, Edmonton, Alberta, Canada
MISTY D. REIS, MN, RN, NP Alberta Health Services-Stollery Children’s Hospital, Edmonton, Alberta, Canada
Culturally competent health care is of critical importance; however, it is presented as a frequent challenge in health care settings. This study explored cross-cultural care from the health care provider perspective within two tertiary level Neonatal Intensive Care Units (NICUs). Fifty eight inter-professional health care providers (HCP) participated in focus groups. Participants identified perceived care-related experiences of newly immigrated parents whose infant received care in the NICU as well as health care provider perspectives on delivering that care. Results identified core processes of “connection” and “disconnection,” which appeared to have a substantial bearing on NICU experience and interaction. Connection comprised congruity, synergy, and “fit,” and resulted in an enhanced relationship between the family and HCP. Disconnection, in contrast, entailed a lack of “fit” and in some cases, misunderstanding and/or conflict between the family and a member or members of the health care team. Connection and disconnection occurred at various junctures of NICU care. These junctures reflected interaction between the family and HCP at the bedside and/or at the level of the unit, hospital, or community
Received January 23, 2013; accepted November 6, 2013. Address correspondence to David B. Nicholas, PhD, RSW, #444, 11044–82 Avenue, Edmonton, Alberta, Canada T6G 0T2. E-mail: [email protected] 135
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at large. Implications for practice, policy, and research are discussed.
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KEYWORDS immigration, neonatal intensive care, familycentered care, culture, culturally competent care
An adverse event at birth or the illness of a neonate may constitute, for some families, their introduction to neonatal and pediatric health care. For new immigrants, this encounter also may represent their initial exposure to a foreign health care system. The neonatal intensive care unit (NICU) represents a unique environment in its early, intensive, and often prolonged treatment of an infant. Recently immigrated families whose infant is in the NICU may be located at the nexus of a precarious, often life-threatening condition in the face of substantial distance from their community of origin, hence their natural support system. Such challenge and vulnerability amplify the need for health care that is delivered in a culturally competent manner (Betancourt, Green, Carrillo, & Aneneh-Firempong, 2003; Carr, 2006).
BACKGROUND Culture is defined as a set of values, beliefs, and norms that direct the thinking and decision making of a group (Leininger & McFarland, 2006). This notion of culture comprises elements that define as well as contribute to or detract from health. Documented poorer health status among many ethnic minority and immigrant communities is widely attributed to inequities in opportunity and resources (Geiger, 2001; Oxman-Martinez et al., 2005). In an American survey of parents of children with special health care needs, Coker, Rodriguez, and Flores (2010) found disparities between Latino, AfricanAmerican, and non-English primary language-speaking families relative to White English-speaking families, regarding experiences of family-centered care (FCC). Diminished family-centeredness in care was reported by nonmajority parents including less time spent with health care providers (HCPs), and decreased HCP sensitivity to family values and customs. The Ontario Quality Health Council (2006) stated in its first annual report that, “. . . some groups, in particular the poor, immigrants, rural residents, and Aboriginals, face greater difficulties in getting care” (p. 6). Guerrero, Chen, Inkelas, Rodriguez, and Ortega (2010) similarly found that disparities exist across racial and ethnic groups in terms of how FCC was perceived. These apparent inequities potentially disadvantage immigrant families in terms of access to, and quality of, health care (Carr, 2006; Kobayashi, Moore, & Rosenberg, 1998).
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In examining quality of care and equity of care delivery, studies identify a range of factors including different expectations between families and HCPs, which may be further impacted by cultural and experiential differences (Kuo et al., 2012). Health care that is not intentionally culturally sensitive may inadvertently perpetuate barriers and negative outcomes such as immigrants being less likely to seek medical attention, and inconsistent follow through on medical advice (Newbold, 2009; Oxman-Martinez et al., 2005). A culturally competent health care system is defined as, “one that acknowledges and incorporates—at all levels—the importance of culture, assessment of cross-cultural relations, vigilance toward the dynamics that result from cultural differences, expansion of cultural knowledge, and adaptation of services to meet culturally unique needs” (Betancourt et al., 2003, p. 294). Attempts to bolster cultural competence in care have been studied. One review of the literature determined that it is unclear if cultural competence training influences patient outcomes; this finding may reflect a lack of high quality studies (Lie, Lee-Rey, Gomez, Bereknyei, & Braddock III, 2011). Other studies have examined specific practices and demonstrated efficacy of cultural competence in care. For instance, Berlin, Nilsson, and Törnkvist (2010) conducted a randomized control trial involving cultural competence training with nurses (N = 51). The study identified statistically significant differences in overall cultural competence. Additionally, Hayward and Charrette (2012) describe a course for physical therapy students around cultural competence, which reportedly improved student capacity for effective care. Regarding a framework of cultural competence, Delphin-Rittmon, Andres-Hyman, Flanagan, and Davidson (2013) identify seven essential tasks for cultural competence: “provide executive level support and accountability; foster patient, community, and key stakeholder participation and partnerships; conduct cultural competence assessments; develop incremental and realistic cultural competence action plans; ensure linguistic competence; diversify, develop, and retain a cultural competence workforce; develop a system strategy for managing staff and patient grievances” (p. 55). Betancourt, Green, and Carrillo (2002) forward a framework for culturally competent care combining three inter-dependent components: organizational cultural competence, systemic cultural competence, and clinical cultural competence. Organization cultural competence involves a leadership and staff base that is reflective of diversity. Accordingly, recruiting and hiring must prioritize diversity (Betancourt et al., 2002). Systemic cultural competence involves a proactive institutional response to barriers that minority populations may face, including having interpreters, providing materials that are appropriate for a range of languages and cultures, and collecting feedback from service users regarding service quality and gaps. Clinical cultural
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competence focuses on a system of cross-cultural training and education for all levels of staff (e.g., front line staff, management) and the implementation of systems to effectively provide this education. Another complementary framework is the Purnell Model for Cultural Competence. This model is depicted pictorially using circular levels, including society, community, family, and the individual. Twelve interconnected cultural domains comprise the core of this approach: (1) overview/heritage (demographics such as country of origin, economics, and reason for emigration); (2) communication (language, paralanguage, and non-verbal cues); (3) family roles and organization (family and gender roles and tasks); (4) workforce issues (autonomy, assimilation, and health care practices from the country of origin); (5) biocultural ecology (genetics and how it relates to hereditary diseases); (6) high-risk behavior (smoking, non-usage of safety equipment, etc.); (7) nutrition (meaning of food, cultural taboos, and food choices); (8) pregnancy and childbearing practices (fertility and contraception practices, and understandings related to pregnancy); (9) death rituals (practices and beliefs around death); (10) spirituality (religious beliefs and practices); (11) health care practice (focus of care such as acute, preventative, and traditional considerations, and perceived individual and team member responsibility and beliefs related to health and mental health); and (12) health care practitioner (professional’s beliefs, including thoughts on the use of traditional medicine and how practitioner gender can influence care) (for more detail, see Purnell, 2002).
ISSUES DURING AND AFTER NICU CARE Immigration can be a difficult period in a family’s life, potentially contributing to stress, depression, and anxiety, all of which have been demonstrated to impose detrimental impacts on maternal and neonatal health and parental well-being. Such impacts have been linked to pre- and perinatal complications, including structural malformations as a result of high stress (Nimby, Lundberg, Sveger, & McNeil, 1999), preeclampsia as a result of depression and anxiety (Kurki, Hiilesmaa, Raitasalo, Mattila, & Ylikorkala, 2000), preterm delivery associated with stress (Lou et al., 1994), and low birth weight again linked with stress and depressive mood (Paarlberg, Vingerhoets, Passchier, Dekker, & van Geijn, 1999). Guttman, To, Dick, and Liu (1999) reviewed immigrant children’s health service utilization, and found that Canadian immigrant children used family physician services less than non-immigrant controls (Guttman et al., 1999). Immigration was found to be a significant factor of poorer developmental attainment for children 1 to 5 years of age (To et al., 2004). Having a low birth weight, being male, and having an immigrant mother increased the risk of poorer developmental attainment at 1 year of age. Similarly, among children
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4 to 5 years of age, poorer developmental attainment was more likely among immigrant families in which the mother also had low educational status (To et al., 2004).
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DIFFERING CULTURAL PERSPECTIVES AND THEIR IMPACT ON HEALTH CARE DELIVERY Values of health care professionals and families have been found to determine personal and professional approach toward medical care (Hammerman et al., 1997; Cuttini & the EURONIC Study Group, 2001). Kodjo (2009) describes a cultural divide wherein medicine is seen as its own culture that may be at odds with the culture of patients and families. Western medicine places an emphasis on notions and assumptions that may be inconsistent with a family’s values such as perspectives related to individualism, the care system, or the family (Kodjo, 2009). In an analysis of the NICU setting in eight Western European countries, Cuttini and the EURONIC Study Group (2001) identify ethical conflicts between family caregivers and HCPs regarding the determination of the “best interest” of the patient. Conflict was noted in terms of miscommunication, language differences, misunderstandings, and different beliefs and values (Cuttini & the EURONIC Study Group, 2001; Hammerman et al., 1997). The literature generally advocates greater knowledge about experiences, gaps, needs, and recommendations related to cross-cultural care. For instance, the Maternal and Child Health Bureau (MCHB) posits an inclusive and culturally competent understanding of family-centered care (FCC) and upholds, “the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. FCC is the standard of practice which results in high quality services” (Arango, 2011, p. 97). Central to MCHB’s application of FCC principles, the family is recognized as the constant in the child’s life, and diversity is honored (Arango, 2011; Kuhlthau et al., 2011). Despite these assertions and an increasing immigrant population across the Western world, there is a surprising lack of pediatric and specifically NICU literature related to cultural competence in care. This gap merits exploration to better understand experiences of both providing and receiving NICU care that is specific to immigrant families. Accordingly, this project explored perceived experiences and needs related to cultural competence— in this case, within NICU settings—from the vantage point of HCPs providing neonatal care. As part of a larger study examining NICU experience for new immigrants, research questions were: (1) From the perspective of HCPs in the NICU, what are the perceived experiences and needs of newly immigrated families (within 5 years of immigration) whose child is receiving NICU care?
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and (2) What are the caregiving experiences of HCPs who provide neonatal care to these families?
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METHODS As little is yet known about immigrant families’ experiences of NICU care nor about the experiences of providing this care, a priority of this study was to develop theory related to cultural competence in the NICU. We implemented a grounded theory approach that offered theory and concept development (Speziale & Carpenter, 2007) with respect to care processes and practices directed to newly immigrated families in the NICU. This approach was selected as it offered fine-grained, process-based findings reflective of participant data. Accordingly, focus groups were designed to elicit information about HCP interactions with new immigrant families within their clinical practice and over time. Moreover, focus groups as a data collection method, were intentionally selected to offer conversational depth through constructs initiated and further explained by, and among, interdisciplinary staff. As an example, initial comments “springboarded” corroboration, elaboration, and/or refutation as ideas, description, and dissent were generated by other members of the focus group. This group process was thought to mirror elements of the actual practice of team-based inter-disciplinarity in the NICU. Accordingly, cross-cultural care was seen to reflect a team-imbued ethos and range of HCP practices, with the process of data capture in this study correspondingly facilitated by a team-oriented focus group methodology. Focus group questions were as follows: (1) Tell us about your care to families who are new immigrants? (Probes: Can you recall a situation that you encountered that was significant to you?; What made this significant to you?; What were the outcomes for the infant/family?; What made a difference?; Can you tell us more about your day-to-day interactions with members of the family?), (2) What do you think it is like for newly immigrated families who receive care in the NICU?, (3) To what extent and how does the team seek to address needs of these families?, (4) As a professional, what have you been taught to believe about health, illness and health care, and how may this be different than that for newly immigrated families?, (5) What do you think are the assumptions embedded in your beliefs?, and (6) What does this mean in terms of how families are engaged in care? The focus groups were co-facilitated by three inter-disciplinary researchers: a neonatologist (LH), a nurse practitioner (MR), and a social worker (DN), each with experience in neonatal care. This offered multiple perspectives for considering and interpreting data. Two of the researchers were experienced focus group facilitators, with one teaching qualitative research and focus group facilitation at the graduate level. Two facilitators were known to participants; however, no participants had direct reporting
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links to research team members, and the lead focus group facilitator was not previously known to any of the participants. Focus groups took place in NICU meeting rooms at convenient times intentionally convened on different days of the week and during day, evening, and night shifts in order to broadly include participants working all shifts. Data were digitally recorded and transcribed verbatim in preparation for analysis. Focus groups lasted approximately one hour, and descriptive demographic information was collected from participants. Data analysis comprised qualitative analysis of focus group transcripts using a thematic analysis approach supported by qualitative data management and analysis software (NVivo 10). Identifying personal information was removed, and transcripts then were subjected to line-by-line coding within each focus group transcript. Upon completion of line-by-line coding within transcripts, comparative coding within and then across transcripts was completed according to grounded theory methodology. This included categorization of codes by a member of the research team (MR) as they emerged including attention to codes that converged and diverged both within and across transcripts. Coding continued until concept saturation was achieved, which was determined by an internal process of team review of the data including researcher review and reflection on the theoretical nature of the data, and ultimate assessment of saturation. Initial open coding was followed by axial coding, which involved categorizing in seeking to understand the relationship of concepts and sub-concepts. At this point, a theoretical framework was emerging, which led to discriminant coding, which entailed a review of categories and codes relative to the data in order to appraise the emerging theory. From this staged process, theoretical depictions were determined, consensus was achieved among the research team, and theoretical notions were checked against data. Methodological rigor reflected truth value, applicability, consistency, and neutrality, as demonstrated by prolonged engagement, peer debriefing, negative case analysis, member checking, thick description, and an audit trail (Padgett, 2008; Tuckett, 2005). Prolonged engagement is demonstrated by multiple focus groups that included inter-professional HCPs at two NICU sites, decades of cumulative experience in this clinical area by the research team, and the team’s immersion in the data and examination of the theoretical depth of findings. Peer debriefing was conducted through periodic clinician/researcher discussion about emerging findings, and member checking reflected a presentation of the findings to clinicians in the NICU in which participants confirmed the resonance of the emergent theory relative to their perspectives and experiences. Negative case analysis was attained by seeking examples of disconfirming data and variation relative to emerging codes and core concepts. Thick description of the data with reference to participant quotes was prioritized, and an audit trail was implemented which ultimately allows potential study reviewers/auditors to verify study processes.
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SAMPLING AND RECRUITMENT HCPs were recruited in two urban tertiary level NICUs in Alberta, Canada. This level of care is offered to the most critically ill infants; hence, the level of acuity and complexity merits clinical acumen that is both intensive and comparable across NICUs. In 2011, Alberta (where the study occurred) had a total of 30,963 “permanent immigrants,” with approximately 59% coming from Asia and the Pacific region, 18% from Africa and the Middle East, 12% from Europe and the United Kingdom, 7% from South and Central America, and 4% from United States (Citizenship and Immigration Canada, 2011). This region therefore offers an ideal location for the substantive focus of this inquiry on immigrant experience. The sample was recruited by invitation to all HCPs (∼300 interdisciplinary staff) in the targeted NICUs via cascaded e-mails and posters. Subsequent purposive/theoretical sampling was conducted through personal follow-up invitations sent to social workers and physicians, after realizing limited participation from these disciplines in initial focus groups. Recruitment letters and information sheets explained the purpose and procedures of the study. If willing to participate, written informed consent was obtained prior to study participation, and institutional research ethics board approval was obtained at host sites and respective universities.
THE SAMPLE Fifty eight HCPs attended 1 of 7 focus groups that ranged from 3–15 participants per group, and each group comprised a comparable diversity of participant gender and years of experience, with the exception of earlier groups that were under-represented by physicians and social workers. Interprofessional diversity among the groups consisted of nurses, respiratory therapists, neonatal nurse practitioners, social workers, neonatologists, neonatal fellows, dieticians, administration staff and students/trainees (Table 1). Years of experience in the NICU ranged from
Social Work in Health Care Publication details, including instructions for authors and subscription information: http://www.tandfonline.com/loi/wshc20
Connection Versus Disconnection: Examining Culturally Competent Care in the Neonatal Intensive Care Unit a
David B. Nicholas PhD RSW , Leonora Hendson MBBCh MSc FRCP(C) b
& Misty D. Reis MN RN NP
c
a
Faculty of Social Work , University of Calgary, Central and Northern Alberta Region , Edmonton , Alberta , Canada b
University of Alberta, Pediatrics , Edmonton , Alberta , Canada
c
Click for updates
Alberta Health Services-Stollery Children's Hospital , Edmonton , Alberta , Canada Published online: 31 Jan 2014.
To cite this article: David B. Nicholas PhD RSW , Leonora Hendson MBBCh MSc FRCP(C) & Misty D. Reis MN RN NP (2014) Connection Versus Disconnection: Examining Culturally Competent Care in the Neonatal Intensive Care Unit, Social Work in Health Care, 53:2, 135-155, DOI: 10.1080/00981389.2013.864377 To link to this article: http://dx.doi.org/10.1080/00981389.2013.864377
PLEASE SCROLL DOWN FOR ARTICLE Taylor & Francis makes every effort to ensure the accuracy of all the information (the “Content”) contained in the publications on our platform. However, Taylor & Francis, our agents, and our licensors make no representations or warranties whatsoever as to the accuracy, completeness, or suitability for any purpose of the Content. Any opinions and views expressed in this publication are the opinions and views of the authors, and are not the views of or endorsed by Taylor & Francis. The accuracy of the Content should not be relied upon and should be independently verified with primary sources of information. Taylor and Francis shall not be liable for any losses, actions, claims, proceedings, demands, costs, expenses, damages, and other liabilities whatsoever or howsoever caused arising directly or indirectly in connection with, in relation to or arising out of the use of the Content. This article may be used for research, teaching, and private study purposes. Any substantial or systematic reproduction, redistribution, reselling, loan, sub-licensing, systematic supply, or distribution in any form to anyone is expressly forbidden. Terms &
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Conditions of access and use can be found at http://www.tandfonline.com/page/termsand-conditions
Social Work in Health Care, 53:135–155, 2014 Copyright © Taylor & Francis Group, LLC ISSN: 0098-1389 print/1541-034X online DOI: 10.1080/00981389.2013.864377
Connection Versus Disconnection: Examining Culturally Competent Care in the Neonatal Intensive Care Unit DAVID B. NICHOLAS, PhD, RSW Downloaded by [Erciyes University] at 23:21 19 December 2014
Faculty of Social Work, University of Calgary, Central and Northern Alberta Region, Edmonton, Alberta, Canada
LEONORA HENDSON, MBBCh, MSc, FRCP(C) University of Alberta, Pediatrics, Edmonton, Alberta, Canada
MISTY D. REIS, MN, RN, NP Alberta Health Services-Stollery Children’s Hospital, Edmonton, Alberta, Canada
Culturally competent health care is of critical importance; however, it is presented as a frequent challenge in health care settings. This study explored cross-cultural care from the health care provider perspective within two tertiary level Neonatal Intensive Care Units (NICUs). Fifty eight inter-professional health care providers (HCP) participated in focus groups. Participants identified perceived care-related experiences of newly immigrated parents whose infant received care in the NICU as well as health care provider perspectives on delivering that care. Results identified core processes of “connection” and “disconnection,” which appeared to have a substantial bearing on NICU experience and interaction. Connection comprised congruity, synergy, and “fit,” and resulted in an enhanced relationship between the family and HCP. Disconnection, in contrast, entailed a lack of “fit” and in some cases, misunderstanding and/or conflict between the family and a member or members of the health care team. Connection and disconnection occurred at various junctures of NICU care. These junctures reflected interaction between the family and HCP at the bedside and/or at the level of the unit, hospital, or community
Received January 23, 2013; accepted November 6, 2013. Address correspondence to David B. Nicholas, PhD, RSW, #444, 11044–82 Avenue, Edmonton, Alberta, Canada T6G 0T2. E-mail: [email protected] 135
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at large. Implications for practice, policy, and research are discussed.
Downloaded by [Erciyes University] at 23:21 19 December 2014
KEYWORDS immigration, neonatal intensive care, familycentered care, culture, culturally competent care
An adverse event at birth or the illness of a neonate may constitute, for some families, their introduction to neonatal and pediatric health care. For new immigrants, this encounter also may represent their initial exposure to a foreign health care system. The neonatal intensive care unit (NICU) represents a unique environment in its early, intensive, and often prolonged treatment of an infant. Recently immigrated families whose infant is in the NICU may be located at the nexus of a precarious, often life-threatening condition in the face of substantial distance from their community of origin, hence their natural support system. Such challenge and vulnerability amplify the need for health care that is delivered in a culturally competent manner (Betancourt, Green, Carrillo, & Aneneh-Firempong, 2003; Carr, 2006).
BACKGROUND Culture is defined as a set of values, beliefs, and norms that direct the thinking and decision making of a group (Leininger & McFarland, 2006). This notion of culture comprises elements that define as well as contribute to or detract from health. Documented poorer health status among many ethnic minority and immigrant communities is widely attributed to inequities in opportunity and resources (Geiger, 2001; Oxman-Martinez et al., 2005). In an American survey of parents of children with special health care needs, Coker, Rodriguez, and Flores (2010) found disparities between Latino, AfricanAmerican, and non-English primary language-speaking families relative to White English-speaking families, regarding experiences of family-centered care (FCC). Diminished family-centeredness in care was reported by nonmajority parents including less time spent with health care providers (HCPs), and decreased HCP sensitivity to family values and customs. The Ontario Quality Health Council (2006) stated in its first annual report that, “. . . some groups, in particular the poor, immigrants, rural residents, and Aboriginals, face greater difficulties in getting care” (p. 6). Guerrero, Chen, Inkelas, Rodriguez, and Ortega (2010) similarly found that disparities exist across racial and ethnic groups in terms of how FCC was perceived. These apparent inequities potentially disadvantage immigrant families in terms of access to, and quality of, health care (Carr, 2006; Kobayashi, Moore, & Rosenberg, 1998).
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In examining quality of care and equity of care delivery, studies identify a range of factors including different expectations between families and HCPs, which may be further impacted by cultural and experiential differences (Kuo et al., 2012). Health care that is not intentionally culturally sensitive may inadvertently perpetuate barriers and negative outcomes such as immigrants being less likely to seek medical attention, and inconsistent follow through on medical advice (Newbold, 2009; Oxman-Martinez et al., 2005). A culturally competent health care system is defined as, “one that acknowledges and incorporates—at all levels—the importance of culture, assessment of cross-cultural relations, vigilance toward the dynamics that result from cultural differences, expansion of cultural knowledge, and adaptation of services to meet culturally unique needs” (Betancourt et al., 2003, p. 294). Attempts to bolster cultural competence in care have been studied. One review of the literature determined that it is unclear if cultural competence training influences patient outcomes; this finding may reflect a lack of high quality studies (Lie, Lee-Rey, Gomez, Bereknyei, & Braddock III, 2011). Other studies have examined specific practices and demonstrated efficacy of cultural competence in care. For instance, Berlin, Nilsson, and Törnkvist (2010) conducted a randomized control trial involving cultural competence training with nurses (N = 51). The study identified statistically significant differences in overall cultural competence. Additionally, Hayward and Charrette (2012) describe a course for physical therapy students around cultural competence, which reportedly improved student capacity for effective care. Regarding a framework of cultural competence, Delphin-Rittmon, Andres-Hyman, Flanagan, and Davidson (2013) identify seven essential tasks for cultural competence: “provide executive level support and accountability; foster patient, community, and key stakeholder participation and partnerships; conduct cultural competence assessments; develop incremental and realistic cultural competence action plans; ensure linguistic competence; diversify, develop, and retain a cultural competence workforce; develop a system strategy for managing staff and patient grievances” (p. 55). Betancourt, Green, and Carrillo (2002) forward a framework for culturally competent care combining three inter-dependent components: organizational cultural competence, systemic cultural competence, and clinical cultural competence. Organization cultural competence involves a leadership and staff base that is reflective of diversity. Accordingly, recruiting and hiring must prioritize diversity (Betancourt et al., 2002). Systemic cultural competence involves a proactive institutional response to barriers that minority populations may face, including having interpreters, providing materials that are appropriate for a range of languages and cultures, and collecting feedback from service users regarding service quality and gaps. Clinical cultural
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competence focuses on a system of cross-cultural training and education for all levels of staff (e.g., front line staff, management) and the implementation of systems to effectively provide this education. Another complementary framework is the Purnell Model for Cultural Competence. This model is depicted pictorially using circular levels, including society, community, family, and the individual. Twelve interconnected cultural domains comprise the core of this approach: (1) overview/heritage (demographics such as country of origin, economics, and reason for emigration); (2) communication (language, paralanguage, and non-verbal cues); (3) family roles and organization (family and gender roles and tasks); (4) workforce issues (autonomy, assimilation, and health care practices from the country of origin); (5) biocultural ecology (genetics and how it relates to hereditary diseases); (6) high-risk behavior (smoking, non-usage of safety equipment, etc.); (7) nutrition (meaning of food, cultural taboos, and food choices); (8) pregnancy and childbearing practices (fertility and contraception practices, and understandings related to pregnancy); (9) death rituals (practices and beliefs around death); (10) spirituality (religious beliefs and practices); (11) health care practice (focus of care such as acute, preventative, and traditional considerations, and perceived individual and team member responsibility and beliefs related to health and mental health); and (12) health care practitioner (professional’s beliefs, including thoughts on the use of traditional medicine and how practitioner gender can influence care) (for more detail, see Purnell, 2002).
ISSUES DURING AND AFTER NICU CARE Immigration can be a difficult period in a family’s life, potentially contributing to stress, depression, and anxiety, all of which have been demonstrated to impose detrimental impacts on maternal and neonatal health and parental well-being. Such impacts have been linked to pre- and perinatal complications, including structural malformations as a result of high stress (Nimby, Lundberg, Sveger, & McNeil, 1999), preeclampsia as a result of depression and anxiety (Kurki, Hiilesmaa, Raitasalo, Mattila, & Ylikorkala, 2000), preterm delivery associated with stress (Lou et al., 1994), and low birth weight again linked with stress and depressive mood (Paarlberg, Vingerhoets, Passchier, Dekker, & van Geijn, 1999). Guttman, To, Dick, and Liu (1999) reviewed immigrant children’s health service utilization, and found that Canadian immigrant children used family physician services less than non-immigrant controls (Guttman et al., 1999). Immigration was found to be a significant factor of poorer developmental attainment for children 1 to 5 years of age (To et al., 2004). Having a low birth weight, being male, and having an immigrant mother increased the risk of poorer developmental attainment at 1 year of age. Similarly, among children
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4 to 5 years of age, poorer developmental attainment was more likely among immigrant families in which the mother also had low educational status (To et al., 2004).
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DIFFERING CULTURAL PERSPECTIVES AND THEIR IMPACT ON HEALTH CARE DELIVERY Values of health care professionals and families have been found to determine personal and professional approach toward medical care (Hammerman et al., 1997; Cuttini & the EURONIC Study Group, 2001). Kodjo (2009) describes a cultural divide wherein medicine is seen as its own culture that may be at odds with the culture of patients and families. Western medicine places an emphasis on notions and assumptions that may be inconsistent with a family’s values such as perspectives related to individualism, the care system, or the family (Kodjo, 2009). In an analysis of the NICU setting in eight Western European countries, Cuttini and the EURONIC Study Group (2001) identify ethical conflicts between family caregivers and HCPs regarding the determination of the “best interest” of the patient. Conflict was noted in terms of miscommunication, language differences, misunderstandings, and different beliefs and values (Cuttini & the EURONIC Study Group, 2001; Hammerman et al., 1997). The literature generally advocates greater knowledge about experiences, gaps, needs, and recommendations related to cross-cultural care. For instance, the Maternal and Child Health Bureau (MCHB) posits an inclusive and culturally competent understanding of family-centered care (FCC) and upholds, “the health and well-being of children and their families through a respectful family-professional partnership. It honors the strengths, cultures, traditions and expertise that everyone brings to this relationship. FCC is the standard of practice which results in high quality services” (Arango, 2011, p. 97). Central to MCHB’s application of FCC principles, the family is recognized as the constant in the child’s life, and diversity is honored (Arango, 2011; Kuhlthau et al., 2011). Despite these assertions and an increasing immigrant population across the Western world, there is a surprising lack of pediatric and specifically NICU literature related to cultural competence in care. This gap merits exploration to better understand experiences of both providing and receiving NICU care that is specific to immigrant families. Accordingly, this project explored perceived experiences and needs related to cultural competence— in this case, within NICU settings—from the vantage point of HCPs providing neonatal care. As part of a larger study examining NICU experience for new immigrants, research questions were: (1) From the perspective of HCPs in the NICU, what are the perceived experiences and needs of newly immigrated families (within 5 years of immigration) whose child is receiving NICU care?
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and (2) What are the caregiving experiences of HCPs who provide neonatal care to these families?
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METHODS As little is yet known about immigrant families’ experiences of NICU care nor about the experiences of providing this care, a priority of this study was to develop theory related to cultural competence in the NICU. We implemented a grounded theory approach that offered theory and concept development (Speziale & Carpenter, 2007) with respect to care processes and practices directed to newly immigrated families in the NICU. This approach was selected as it offered fine-grained, process-based findings reflective of participant data. Accordingly, focus groups were designed to elicit information about HCP interactions with new immigrant families within their clinical practice and over time. Moreover, focus groups as a data collection method, were intentionally selected to offer conversational depth through constructs initiated and further explained by, and among, interdisciplinary staff. As an example, initial comments “springboarded” corroboration, elaboration, and/or refutation as ideas, description, and dissent were generated by other members of the focus group. This group process was thought to mirror elements of the actual practice of team-based inter-disciplinarity in the NICU. Accordingly, cross-cultural care was seen to reflect a team-imbued ethos and range of HCP practices, with the process of data capture in this study correspondingly facilitated by a team-oriented focus group methodology. Focus group questions were as follows: (1) Tell us about your care to families who are new immigrants? (Probes: Can you recall a situation that you encountered that was significant to you?; What made this significant to you?; What were the outcomes for the infant/family?; What made a difference?; Can you tell us more about your day-to-day interactions with members of the family?), (2) What do you think it is like for newly immigrated families who receive care in the NICU?, (3) To what extent and how does the team seek to address needs of these families?, (4) As a professional, what have you been taught to believe about health, illness and health care, and how may this be different than that for newly immigrated families?, (5) What do you think are the assumptions embedded in your beliefs?, and (6) What does this mean in terms of how families are engaged in care? The focus groups were co-facilitated by three inter-disciplinary researchers: a neonatologist (LH), a nurse practitioner (MR), and a social worker (DN), each with experience in neonatal care. This offered multiple perspectives for considering and interpreting data. Two of the researchers were experienced focus group facilitators, with one teaching qualitative research and focus group facilitation at the graduate level. Two facilitators were known to participants; however, no participants had direct reporting
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links to research team members, and the lead focus group facilitator was not previously known to any of the participants. Focus groups took place in NICU meeting rooms at convenient times intentionally convened on different days of the week and during day, evening, and night shifts in order to broadly include participants working all shifts. Data were digitally recorded and transcribed verbatim in preparation for analysis. Focus groups lasted approximately one hour, and descriptive demographic information was collected from participants. Data analysis comprised qualitative analysis of focus group transcripts using a thematic analysis approach supported by qualitative data management and analysis software (NVivo 10). Identifying personal information was removed, and transcripts then were subjected to line-by-line coding within each focus group transcript. Upon completion of line-by-line coding within transcripts, comparative coding within and then across transcripts was completed according to grounded theory methodology. This included categorization of codes by a member of the research team (MR) as they emerged including attention to codes that converged and diverged both within and across transcripts. Coding continued until concept saturation was achieved, which was determined by an internal process of team review of the data including researcher review and reflection on the theoretical nature of the data, and ultimate assessment of saturation. Initial open coding was followed by axial coding, which involved categorizing in seeking to understand the relationship of concepts and sub-concepts. At this point, a theoretical framework was emerging, which led to discriminant coding, which entailed a review of categories and codes relative to the data in order to appraise the emerging theory. From this staged process, theoretical depictions were determined, consensus was achieved among the research team, and theoretical notions were checked against data. Methodological rigor reflected truth value, applicability, consistency, and neutrality, as demonstrated by prolonged engagement, peer debriefing, negative case analysis, member checking, thick description, and an audit trail (Padgett, 2008; Tuckett, 2005). Prolonged engagement is demonstrated by multiple focus groups that included inter-professional HCPs at two NICU sites, decades of cumulative experience in this clinical area by the research team, and the team’s immersion in the data and examination of the theoretical depth of findings. Peer debriefing was conducted through periodic clinician/researcher discussion about emerging findings, and member checking reflected a presentation of the findings to clinicians in the NICU in which participants confirmed the resonance of the emergent theory relative to their perspectives and experiences. Negative case analysis was attained by seeking examples of disconfirming data and variation relative to emerging codes and core concepts. Thick description of the data with reference to participant quotes was prioritized, and an audit trail was implemented which ultimately allows potential study reviewers/auditors to verify study processes.
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SAMPLING AND RECRUITMENT HCPs were recruited in two urban tertiary level NICUs in Alberta, Canada. This level of care is offered to the most critically ill infants; hence, the level of acuity and complexity merits clinical acumen that is both intensive and comparable across NICUs. In 2011, Alberta (where the study occurred) had a total of 30,963 “permanent immigrants,” with approximately 59% coming from Asia and the Pacific region, 18% from Africa and the Middle East, 12% from Europe and the United Kingdom, 7% from South and Central America, and 4% from United States (Citizenship and Immigration Canada, 2011). This region therefore offers an ideal location for the substantive focus of this inquiry on immigrant experience. The sample was recruited by invitation to all HCPs (∼300 interdisciplinary staff) in the targeted NICUs via cascaded e-mails and posters. Subsequent purposive/theoretical sampling was conducted through personal follow-up invitations sent to social workers and physicians, after realizing limited participation from these disciplines in initial focus groups. Recruitment letters and information sheets explained the purpose and procedures of the study. If willing to participate, written informed consent was obtained prior to study participation, and institutional research ethics board approval was obtained at host sites and respective universities.
THE SAMPLE Fifty eight HCPs attended 1 of 7 focus groups that ranged from 3–15 participants per group, and each group comprised a comparable diversity of participant gender and years of experience, with the exception of earlier groups that were under-represented by physicians and social workers. Interprofessional diversity among the groups consisted of nurses, respiratory therapists, neonatal nurse practitioners, social workers, neonatologists, neonatal fellows, dieticians, administration staff and students/trainees (Table 1). Years of experience in the NICU ranged from
