When Family-Centered Care Is Challenged by Infectious Disease: Pediatric Health Care Delivery During the SARS Outbreaks

Abstract

In this ethnographic study, the authors examined the experiences and perspectives of children hospitalized because of SARS (severe acute respiratory syndrome), their parents, and pediatric health care providers. The sample included 5 children, 10 parents, and 8 health care providers who were directly affected by SARS during the time of the outbreaks and extreme infection control procedures. The data analyses illuminated a range of perceived experiences for this triadic sample. Issues related to social isolation due to infection control precautions were predominant. Themes included emotional upheaval, communication challenges, and changes in parental and professional roles. These findings reveal the cogent effects of SARS on family-centered care. The notion of providing family-centered care within an environment plagued by an infectious outbreak suggests an omniously difficult task. Efforts must be made to optimize family-centered care despite obstacles. The authors suggest effective clinical approaches in the event of future outbreaks.

Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

“…Figure 3 illustrates that the key antecedents of family-centred care and partnership-in-care identified through in our concept synthesis are: a theory-practice gap, unclear roles and boundaries, entrenched professional practices and attitudes towards working with families, and lack of organisational or managerial guidelines or policies specifically aimed at supporting the implementation of patient-centred care.  Gap exist between theory and practice (Coyne, 2011;Coyne et al 2013b;Hughes, 2007;Murphy & Fealy, 2007)  Operationalising family-centred care is hindered by individual health professions attitudes towards, values and perception of and family-centred care (Ladak et al 2013;Maccdonald et al 2012)  Unclear roles and boundaries between parents and health professionals, entrenched professional practices with health professionals retaining role of decision maker, care prescriber and care giver (Bridgeman, 1999;Bruce et al 2002;Coyne, 2013a;Hughes, 2007;Murphy & Fealy, 2007;Paliadelis, et al 2005)  Inadequate nursing assessment and documentation relating to role negotiate; lack of knowledge and skills in relation to implementing family-centred care; operates without effective sharing of information, and collaboration or negotiation with families (Bruce et al 2002;Coyne 2013a;Holm, et al 2003;MacKay & Gregory, 2011)  Lack of organisational, managerial support, guidelines or policies hinders the implementation and consistency of embedding family centred care in practice of familycentred care (Coyne, 2011;Davies 2013, Coyne 2013bMacKay & Gregory, 2011MacKean et al 2005)  The design and organisation of the care environment can be facilitator or a barriers to embedding family to care into practice (Beck, 2009;Coyne et al 2013b;Coyne, 2011;Koller et al 2006;Bruce et al 2002)  Model outdated and does not reflect current practice' partnership professional rather tha...…”

“…Valuing parents' knowledge and experiences  Know the family and developing effective parent-professional relationship (Davies, 2012;Murphy & Fealy, 2007)  Collaborate and share decisions about child's care (Coyne, 2011;MacLean et al 2007)  Effective communication skills (MacKean et al 2005)  Build trust, listen to parent concerns, value parents knowledge of their child (Fereday, et al 2010;Ford, 2011)  Respecting and being sensitive to individual family's context (Raghavendra, et al 2007) Supporting parents in their role as care giver  Provide opportunities for information sharing (Bruce, et al 2002;Coyne, 2011;Coyne, 2013b;Holm, et al 2003;Koller, 2006;)  Facilitate parents to involved in the child care; clarify and negotiate roles (Coyne, 2011;Holm, et al 2003;Hughes, 2007)  Professionals have and share specialised knowledge to support family (Davies, 2012)  Design services round the child and family needs (Bruce, et al 2002)  Maintain contact and going support (Coyne & Cowley, 2007;Ford, 2011)  Mutual exchange of information about the child's specific health issues (Ford, 2011;Lam, et al 2006;Lee, 2007) Incorporating parents' expertise into clinical and psychosocial care…”

Lessons Learned for Pediatric Pandemic Planning in Palliative Care: A Case Study

“…Similar to the adult literature on individuals hospitalized during the SARS outbreak either for SARS or unrelated conditions [9], Koller and colleagues [8] found that pediatric patients and their families were subjected to rigid precautions. These included potential isolation and quarantine; hospital entry screening procedures, stringent in-hospital visitor restrictions, follow-up clinic closures, potential surgery reductions, limited or unavailable home based health services, uncertainties associated with SARS contagion, gowned or masked health care providers which may have caused negative connotations or fear in children, increased illness acuity due to service unavailability, and potential undertreatment during intensified infection control practices [8,10]. The research literature further suggests that in adult and paediatric settings, patients, families, and staff members experienced isolation, insomnia, heightened anxiety and stress, disruptions and/or reduced access to services, and compromised physical and emotional health [9,11,12].…”

“…During the SARS outbreak, isolation and quarantine procedures that had not been in place for over 50 years were implemented within health care facilities and communities [2,[7][8][9]. Similar to the adult literature on individuals hospitalized during the SARS outbreak either for SARS or unrelated conditions [9], Koller and colleagues [8] found that pediatric patients and their families were subjected to rigid precautions.…”

“…Research literature addressing the experience of SARS illuminates a needed balance during pandemics with regards to infection prevention and control practices and procedures as well as FCC [3,8,10,20]. Regardless of the relative paucity of paediatric cases of SARS, the unknown risk of infection and transmission during the outbreak resulted in strict infection control precautions.…”