FAMILY EMPOWERMENT AS A PROCESS
Nursing interventions that address the family take place within
what Knafl (1992) called the family-practitioner interface. In the case
of families of children with a chronic health condition, the familypractitioner
interface is an evolving relationship that develops and
changes over time. The family and the nurse bring to the relationship
their own health care systems derived from values and beliefs
grounded in their perspective cultures and circumstances (Kleinman,
Eisenberg, & Good 1978; Leahey & Harper-Jaques, 1996; Lynch &
Tiedje, 1991). In addition, families of children with a chronic health
condition bring to the relationship a range of responses to their child’s
condition that have been conceptualized by researchers as family impact,
coping, adjustment, adaptation, or management (Knafl, 1992).
The process in which the family-practitioner relationship evolves
has been studied in the context of a variety of chronic conditions and
settings. In a review of 16 recent qualitative studies with sample sizes
ranging from 1 to 139, Dixon (1996) found four unifying concepts:
trust, information gathering, participation in care, and decision making.
The first concept, trust, appeared to be the cornerstone of a productive
partnership with health professionals, yet trust could dissolve
if the best interests of the family and child were perceived to be
dishonored. The second concept, information gathering, allowed the
parents in these studies to gain control and manage the uncertainty
that some health professionals fostered by withholding information.
Participation in care, the third concept, was quite evident in these
studies as demonstrated by the parents’ development of expertise in
all aspects of the child’s care. This is probably a reflection of the trend
toward more parental involvement in care in the past two decades,
whether in hospital, home, or outpatient settings. Finally, any
changes in the first three concepts (trust, information gathering, and
participation in care) fueled changes in the last concept: decision
making.
Dixon (1996) identified and labeled four phases of decision making
that were remarkably consistent across the studies she reviewed: (a)
professional dominated, (b) participatory, (c) challenging, and (d)
collaborative. As parents moved through the phases from passive to
active involvement in decision making, trust was associated with the
professional dominated stage, curiosity with the participatory stage,
anger and mistrust with the challenging stage, and self-confidence
and advocacy with the collaborative stage.
In two of the studies reviewed by Dixon (1996), the term empowerment
was specifically used to describe this decision-making process.
In the first study, Wuest and Stern (1991) interviewed 30 persons from
12 families with children experiencing otitis media with effusion.
Learning how to manage family life when a child has a persistent illness was the main concern of the families. Wuest and Stern (1991) labeled
the process of learning how to manage empowerment. The second
study was a continuation by Gibson (1995) of her development of
empowerment as a concept. As recommended by Schwartz-Barcott
and Kim (1993), she conducted a field study to tie her theoretical work
(Gibson, 1991) with empirical observations. Data were collected from
both participant observation and interviews of 12 mothers of hospitalized
children with a chronic neurological condition.
Both Gibson (1995) and Wuest and Stern (1991) noted that the
phases of the empowerment process do not represent a linear oneway
process but rather a repetitive and interactive one. Changes in
the child’s health status, the family’s relationship with the health care
system, and the amount of disruption to family life were all found by
Wuest and Stern (1991) to be capable of reversing or delaying the process.
Gibson (1995) cited the mother’s values, beliefs, experiences, determination,
and social support as influences on the process. Interestingly,
in both studies, it was the negative aspects of their relationships
with health professionals that motivated families to progress forward
in the process of empowerment. Nonetheless, both authors asserted
that positive relationships with nurses have the potential to facilitate
empowerment, especially if nurses relinquish any perceived monopoly
on expertise and thoughtfully listen to the family’s concerns and
wisdom (Gibson, 1995; Wuest & Stern, 1991).
FAMILY EMPOWERMENT AS A PROCESSNursing interventions that address the family take place withinwhat Knafl (1992) called the family-practitioner interface. In the caseof families of children with a chronic health condition, the familypractitionerinterface is an evolving relationship that develops andchanges over time. The family and the nurse bring to the relationshiptheir own health care systems derived from values and beliefsgrounded in their perspective cultures and circumstances (Kleinman,Eisenberg, & Good 1978; Leahey & Harper-Jaques, 1996; Lynch &Tiedje, 1991). In addition, families of children with a chronic healthcondition bring to the relationship a range of responses to their child’scondition that have been conceptualized by researchers as family impact,coping, adjustment, adaptation, or management (Knafl, 1992).The process in which the family-practitioner relationship evolveshas been studied in the context of a variety of chronic conditions andsettings. In a review of 16 recent qualitative studies with sample sizesranging from 1 to 139, Dixon (1996) found four unifying concepts:trust, information gathering, participation in care, and decision making.The first concept, trust, appeared to be the cornerstone of a productivepartnership with health professionals, yet trust could dissolveif the best interests of the family and child were perceived to bedishonored. The second concept, information gathering, allowed theparents in these studies to gain control and manage the uncertaintythat some health professionals fostered by withholding information.Participation in care, the third concept, was quite evident in thesestudies as demonstrated by the parents’ development of expertise inall aspects of the child’s care. This is probably a reflection of the trendtoward more parental involvement in care in the past two decades,whether in hospital, home, or outpatient settings. Finally, anychanges in the first three concepts (trust, information gathering, andparticipation in care) fueled changes in the last concept: decisionmaking.Dixon (1996) identified and labeled four phases of decision makingthat were remarkably consistent across the studies she reviewed: (a)professional dominated, (b) participatory, (c) challenging, and (d)collaborative. As parents moved through the phases from passive toactive involvement in decision making, trust was associated with theprofessional dominated stage, curiosity with the participatory stage,anger and mistrust with the challenging stage, and self-confidenceand advocacy with the collaborative stage.In two of the studies reviewed by Dixon (1996), the term empowermentwas specifically used to describe this decision-making process.In the first study, Wuest and Stern (1991) interviewed 30 persons from12 families with children experiencing otitis media with effusion.Learning how to manage family life when a child has a persistent illness was the main concern of the families. Wuest and Stern (1991) labeledthe process of learning how to manage empowerment. The secondstudy was a continuation by Gibson (1995) of her development ofempowerment as a concept. As recommended by Schwartz-Barcottand Kim (1993), she conducted a field study to tie her theoretical work(Gibson, 1991) with empirical observations. Data were collected fromboth participant observation and interviews of 12 mothers of hospitalizedchildren with a chronic neurological condition.Both Gibson (1995) and Wuest and Stern (1991) noted that thephases of the empowerment process do not represent a linear onewayprocess but rather a repetitive and interactive one. Changes inthe child’s health status, the family’s relationship with the health caresystem, and the amount of disruption to family life were all found byWuest and Stern (1991) to be capable of reversing or delaying the process.Gibson (1995) cited the mother’s values, beliefs, experiences, determination,and social support as influences on the process. Interestingly,in both studies, it was the negative aspects of their relationshipswith health professionals that motivated families to progress forwardin the process of empowerment. Nonetheless, both authors assertedthat positive relationships with nurses have the potential to facilitateempowerment, especially if nurses relinquish any perceived monopolyon expertise and thoughtfully listen to the family’s concerns andwisdom (Gibson, 1995; Wuest & Stern, 1991).
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