Bridging the divide between families and health professionals’ perspectives on family‐centred care

Abstract

Objectives To describe and discuss key findings from a recent research project that challenge an increasingly prevalent theme, apparent in both family-centred care research and practice, of conceptualizing family-centred care as shifting care, care management, and advocacy responsibilities to families. The purpose of the research, from which these findings emerged, was to develop a conceptualization of family-centred care grounded in the experiences of families and direct health-care providers.Design Qualitative research methods, following the grounded theory tradition, were used to develop a conceptual framework that described the dimensions of the concept of family-centred care and their interrelationships, in the substantive area of children's developmental services. This article reports on and extends key findings from this grounded theory study, in light of current trends in the literature.Setting and participants The substantive area that served as the setting for the research was developmental services at a children's hospital in Alberta, Canada. Data was collected through focus groups and individual interviews with 37 parents of children diagnosed with a developmental problem and 16 frontline health-care providers.Findings Key findings from this research project do not support the current emphasis in family-centred care research and practice on conceptualizing family-centred care as the shifting of care, care management, and advocacy responsibilities to families. Rather, what emerged was that parents want to work truly collaboratively with health-care providers in making treatment decisions and on implementing a dynamic care plan that will work best for child and family.Discussion and conclusions A definition of collaboration is provided, and the nature of collaborative relationships described. Contributing factors to the difficulty in establishing true collaborative relationships between families and health-care professionals, where the respective roles to be played by health-care professionals and families are jointly determined, are discussed. In light of these findings we strongly advocate for the re-examination of current family-centred care policy and practice.

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...…”

“… Include and value parents contribution to the care team (Davies, 2012)  Clear roles and effective interdisciplinary collaboration (Coyne, 2011;MacKean et al 2005)  Mutual agreement about roles (Coyne & Cowley, 2007)  Focus on problem-based communications by listening to the family, drawing on family expertise, responding to family concerns (Mäenpää et al 2013) …”

“…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…”

Testing the Feasibility of Skype and FaceTime Updates With Parents in the Neonatal Intensive Care Unit

“…9,10 However, as noted by Kon et al, 11 family members' desires and abilities to be involved in decision making vary greatly along a "shared decision-making continuum" that ranges from physician-driven to patient/family-driven decision making. If applied as originally intended, FCC allows providers and patients' families to find the most appropriate balance of decisional authority by using an individualized and collaborative approach to care and planning.…”

“…[12][13][14][15] Parents of hospitalized children desire to see familiar faces, be provided with honest information, be included as part of the team, and trust what is being communicated. 10,[16][17][18][19][20] Inconsistent caregivers, poor communication, and mistrust can contribute to conflict between providers and patients' families and to regret. 18,[21][22][23][24] However, provider continuity is unrealistic in intensive care settings because of the involvement of multiple professions and the 24/7 nature of the work.…”