Ineffective Family Participation in Professional Care:
A Concept Analysis of a Proposed Nursing Diagnosis
Aeran Lee, MS, RN, and Martha Craft-Rosenberg,PhD, RN, FAAN
PURPOSE. To discuss the label, definition,
defining characteristics, and related factors of a
proposed nursing diagnosis, “ineffective family
participation in professional care.”
DATA SOURCES. Published research articles,
clinical handbooks, textbooks.
DATA SYNTHESIS. Although a number of family-
related nursing diagnoses exist, none really
addresses the problems encountered if family
members are unwilling or unable to participate in
patient care. This is critical because the bulk of
care occurs outside the hospital setting.
CONCLUSIONS. A new nursing diagnosis,
“Ineffective family participation in professional
care” is needed. This diagnosis has been
submitted to the Nursing Diagnosis Extension
and Classification for consideration.
PRACTICE IMPLICATIONS. With this diagnosis
nurses could encourage family participation in
care more effectively by focusing on assessment
and interventions.
Search terms: Concept analysis, family
participation, nursing diagnosis
Nursing Diagnosis Volume 13, No. 1,January-March,2002
Participation familiale inefficace aux soins
professionnels: Analyse conceptuelle d’un
diagnostic infirmier propose
BUTS. Discuter du titre, de la dkfinition, des
caractkristiques et des facteurs favorisants d’un
nouvea u diagnostic infirmier: ”participation
familiale ineficace aux soins professionnels”.
SOURCES. Articles de recherche, extraits
d ’ouvrages cliniques .
RESULTATS. Malgrk la prksence d’un certain
nombre de diagnostics infirmiers centrks sur la
famille, aucun d’entre eux ne dksigne les
problimes poses par les familles qui ne souhaitent
pas ou ne sont pas capables de participer aux
soins du patient. Ce phinomine est important,
compte tenu de la grande quantitk de soins extra-
hospitaliers.
CONCLUSIONS. II semble nkcessaire de disposer
d’un nouveau diagnostic infirmier “Participation
familiale ineficace aux soins professionnels”. Ce
diagnostic a ktte‘ soumis au Groupe d’Extension et
de Classification des Diagnostics Infirmiers, afin
qu’il soit e‘tudik.
IMPLICATIONSPRATIQUES. L’utilisation de ce
diagnostic devrait permetire aux infirmiires de
focaliser l‘kvaluation et les interventions de soins,
afin d’impliquer plus eficacement la famille dans
les soins.
Mots-cl6s: Analyse conceptuelle, diagnostic
infirmier, participation de la famille
5
Ineffective Family Participation in Professional Care: A Concept Analysis of a Proposed
Nursing Diagnosis

ParticipaqZo familiar ineficaz no cuidado

profissional: Andise de conceito de um
diagnbstico de enfermagem proposto

OBJETIVO. Discutir o titulo, definiqio,

caracteristicas definidoras e fatores relacionados
de um diagndstico de enfermagem proposto,
”participaqio familiar ineficaz no cuidado
profissional ”.
FONTES DE DADOS. Artigos de pesquisa
publicados, manuais clinicos, livros-texto.
ACHADOS. Embora exista um certo nzhero de
diagndsticos de enfermagem relacionados a
famflia, nenhum deles trata realmente dos
problemas encontrados quando mernbros da
familia nio desejam ou nio conseguem participar
do cuidado do paciente. Isto e‘ critico, porque uma
grande parte dos cuidados ocorre fora do
ambiente hospitalar.
CONCLUSAO. € necesslirio um nova diagndstico
de ”Participaqio familiar eficaz no cuidado
profissional”. Este diagndstico foi submetido a
apreciaqio da Extensio e Classificaqio de
Diagndsticos de Enfermagem.
IMPLICAC~ESPARA A PRATICA. Corn este
diagndstico, as enfermeiras podem encorajar a
participa@o da familia no cuidado de maneira
mais efetiva, com enfuque em levantamento de
dados e intervenqljes.
Palavras para busca: Anlilise de conceito,
d iagnds t ico de enfermagem, part icipaqio fam iliar

6 Nursing Diagnosis Volume 13,No. 1,January-March,2002

Participacidn familiar ineficaz en cuidados
profesionales: Anilisis de concepto de este
diagndstico enfermero que se ha propuesto
PROPOSITO. Discutir la etiqueta, definicidn,
caracteristicas definitorias y factores relacionados
del diagndstico propuesto ”participacidn familiar
ineficaz en cuidados profesionales.”
FUENTES DE DATOS. Articulos de investigacidn
publicados, manuales clinicos, libros de texto.
RESULTADOS. Aunque existen varios
diagndsticos enfermeros relacionados con la
familia, ninguno realmente enfoca 10s problemas
encontrados, si las familias no quieren o no
pueden participar en el cuidado del paciente. Esto
es critico, porque la mayor parte de 10s cuidados
tienen lugar fuera del entorno del hospital.
CONCLUSIONES. Se necesita un nuevo
diagndstico de enfermeria “participacidn familiar
ineficaz en cuidados profesionales”. Este
diagndstico ha sido presentado a Nursing
Diagnosis Extension and Classification para su
consideracidn.
IMPLICACIONESPARA LA PRACTICA. Con este
diagndstico, las enfermeras podrian animar la
participacidn familiar en los cuidados mlis
eficazmente, centra’ndose en la valoracidn y las
intersenciones.
Terminos de busqueda: Andisis de concepto,
diagndstico enfermero, participacidn familiar
Nursing Diagnosis Volume 13,No.1,January-March,2002
Aeran Lee, M S , RN, is Professor of Nursing, Wonkwang
Health Science College, Iksan, Chonbuk, Korea. Martha
Craft-Rosenberg, PhD, RN, FAAN, is Professor of Nursing
and Principal Investigator, Nursing Diagnosis Extension
and Classification, The University of Iowa, Iowa City, IA.
F o r many years, healthcare professionals functioned in
environments in which they provided care, made deci-
sions, and controlled the flow of information to families
(Biley, 1992; Dixon, 1996; Hulme, 1999; Robinson, 1996;
Specht et al., 2000).But the role of patients and their fam-
ilies has been changing from being a passive recipient of
care to one of taking an active role (Biley; Igoe, 1991).
Some researchers (Bruce & Ritchie, 1997; Coyne, 1996;
Dixon; Schumacher & Stewart, 2000; Shelton, Jeppson, &
Johnson, 1987) suggested that family should be the cen-
ter of the service delivery system universe because the
ultimate responsibility for managing an ill member’s
health and social and emotional needs lies with the fam-
ily They added that the healthcare system must enable
families to function as primary decision makers, care-
givers, teachers, and advocates for the ill person.
Dramatic technological advances over the past three
decades have enabled children, adults, and elderly indi-
viduals with severe medical conditions and disabilities
to live when they likely never would have survived in
the past (Bond, Phillips, & Rollins, 1994; Laitinen, 1993;
Maas et al., 2001). The increasing number of elderly and
people with health problems requires families and
healthcare professionals to ensure appropriate health
care and optimal quality of life (Angst & Deatrick, 1996;
Dixon, 1996; Faux & Seidman, 1996; Knafl, Breitmayer,
Gallo, & Zoeller, 1996; Maas et al.).
Accordingly, the involvement of families in patient
care has been recommended as a goal in holistic care
(Ahmann, 1994; Laitinen, 1993).Families are not only eli-
gible to receive services such as family counseling, but
they also are the ones who decide, if they wish, on the
nature and types of services their affected member will
receive (Bond et al., 1994; Laitinen, 1992). Families also
7
Ineffective Family Participation in Professional Care: A Concept Analysis of a Proposed
Nursing Diagnosis
have realized the need for a different role in various
areas such as their own homes, hospitals, nursing
homes, institutions, and community areas (Dixon, 1996;
Maas et al., 2001; Specht et al., 2000).
It is a critical time for nurses to support families in
caring for their relatives of all ages, and it is important
that families are given the opportunity to become more
involved in caring (Laitinen, 1992; Specht et al., 2000). Be-
cause many families want to work collaboratively in a
nonhierarchicalhealthcare relationship, nurses must help
the families to help themselves (Robinson, 1996).The tra-
ditional nursing process must be altered to include cer-
tain elements that enable, empower, and strengthen fam-
ilies as well as promote acquisition of the competencies
necessary to meet needs (Bond et al., 1994). However,
families still have many difficulties in participating in the
care of their ill members because of healthcare profes-
sionals’ attitudes and administrative barriers, as well as
the families’ own reluctance (Clarke, 2000; Jeppson &
Thomas, 1999; Specht et al.). Family members may even
meet resistance from nurses in attempting to carry out
decision malung, protective care, or other aspects of the
new role (Angst & Deatrick, 1996; Maas et al., 2001;
Specht et al.).
Despite a decade of family-related research, there is no
guide for nurses to assess the issues of family participa-
tion in varied settings (Clarke, 2000; Cohen, 1999; Friede-
mann, Montgomery, Maiberger, & Smith, 1997; Li, Stew-
ard, & Imle, 2000; Maas et al., 2001). Though there are
several diagnoses (NANDA, 2001) related to the family,
compromised family coping, disabled family coping, ineffective
family therapeutic regimen management, caregiver role strain,
risk for caregiver role strain, interrupted family process, dys-
functional family processes, and noncompliancedo not reflect
a family’s need to be involved in the care of relatives, nor
do they cover all the challenging roles of families. A new
language about family participation in care is necessary
for balancing professional recommendations with the
family’s priorities. The purpose of this paper is to address
the imbalance of partnership of families and nurses and
propose a diagnosis that can be used to encourage fami-
lies to participate in care of ill family members.
8 Nursing Diagnosis Volume 13, No. 1, January-March,2002
Literature Review
Under the old paradigm, families were expected to
behave and care for their affected members as dictated
by healthcare experts (Hulme, 1999).Differences of opin-
ion between healthcare providers and families under this
paradigm often caused family members to feel underval-
ued, angry, confused, hopeless, helpless, powerless, re-
sentful, uncertain, and dissatisfied (Healy & Smith, 1988;
Riper, 1999).Under the new paradigm, by contrast, the
family is the center of care. In interactions with family
members, nurses and other healthcare professionals
need to give up some of their power and help families
gain power (Hulme).
Most of the themes of family-centered care were iden-
tified in the 1970s and have been elaborated on since
then (Dixon, 1996).Family-centered care is based on the
philosophy of strengthening family functioning and en-
hancing self-efficacy in the family (Bruce & Ritchie,
1997).According to this philosophy, families should be
supported in their natural caregiving and decision-
making roles by building on their unique strengths.
Family-centered care empowers families (Dunst & Tri-
vette, 1996).
Empowerment is defined as a social process of rec-
ognizing, promoting, and enhancing the ability of peo-
ple to meet their own needs, solve their own problems,
and mobilize the necessary resources in order to feel in
control of their own lives (Gibson, 1991). In nursing,
the concept of empowerment has been compared to
and contrasted with caring and advocacy (Hulme,
1999). Kalyanpur and Rao (1991) suggested that em-
powerment involves caring, respect, and acceptance of
differences.
Dixon (1996) proposed four phases of the family-
empowerment process: professional-dominant, partici-
patory, challenging, and collaborative. The professional-
dominant phase is characterized by a highly trusting de-
pendence on healthcare professionals. In the
participatory phase, family members begin to see them-
selves as important participants in health care. In the
challenging phase, the balance of power begins to shift
from healthcare professionals to the family. In the collab-
orative phase, the family assumes a new identity by b e
coming more self-confident and assertive and less reliant
on healthcare professionals. Dunst and Trivette (1996)
also proposed participatory experiences as one of the
major components of empowerment and described par-
ticipatory experiences including a wide range of collabo-
rative transactions brought about by the common inter-
ests and concerns of two or more people.
Perkins (1993) distinguished the concept of involve-
ment from that of participation and suggested that the
degree of involvement should not be confused with
the degree of participation. For example, a mother
may be very involved in attending to her child’s emo-
tional comfort needs but may choose not to participate
in direct medical care, such as dressing changes or
special feedings. On the other hand, Dunst and Triv-
ette (1996) insisted that participatory involvement
should include providing help-receivers with oppor-
tunities to discuss intervention options and the bene-
fits or Iimitations of different choices, providing infor-
mation for making choices, and collaborating and
sharing decision making between help-receiver and
help-givers.
Participation in care is an especially important con-
cept for those who call for increased adoption of fam-
ily-centered care. Family-centered care can be consid-
ered as a special case of effective help-giving, and
effective help-giving is a special case of empowerment
practices (Coyne, 1996; Dunst & Trivette, 1996). Based
on these suggestions, family participation in the care
of an affected family member is an essential compo-
nent of family-centered care that can be executed
through the process of empowering the family. Figure
1 presents a concept map for family-centered care, em-
powerment, and family participation in professional
care.
Concept Analysis
Methods of concept analysis based on proposals by
Clark, Craft-Rosenberg,and Delaney (2000) were used to
Nursing Diagnosis Volume 13,No.1,January-March,2002
Figure 1. The Concept Map for Family-Centered Care,
Empowerment, and Family Participation in
Care
participation in
care
I I
examine this topic. There are four stages in this process:
(a) identifying literature related to the concept; (b) re-
viewing each literature source for definitions, defining
characteristics, related factors and risk factors, linkages
with nursing interventions and nursing outcomes, and
patient population; (c) comparing defining characteris-
tics, related factors, and risk factors derived from the lit-
erature to those from the NANDA taxonomy; and (d)
generating or revising a diagnosis label, definition for the
diagnosis label, and a list of defining characteristics, and
related factors or risk factors that reflect all dimensions of
the diagnosis.
Articles or segments of clinical handbooks and
textbooks with current information and research
studies across the life span and in many settings
were reviewed. Through the four stages, the concep-
tual definition, defining characteristics (signs and
symptoms), and related factors of the new diagnosis,
”ineffective family participation in professional
care,” were extracted and differentiated from the cur-
rent NANDA diagnoses related to family. These
NANDA diagnoses include caregiver role strain, inef-
fective family therapeutic regimen management, compro-
mised family coping, disabled family coping, interrupted
family process, and noncompliance.
The new diagnosis has been submitted for consid-
eration to the Nursing Diagnosis Extension and Clas-
sification Research Team (NDEC), for later placement
in a database for clinical testing to provide further
validation.
9
Ineffective Family Participation in Professional Care: A Concept Analysis of a Proposed
Nursing Diagnosis
Proposed Nursing Diagnosis
Definition
The word participation means “the act of taking part in
an activity or event” and “becomes actively involved in or
shares in the nature of something with others” (Cahill,
1996, p. 564). What family caregivers do for their relatives
has been described as family participation in physical care,
in decision making, or in the evaluation of care (Cahill;
Coyne, 1996; Laitinen, 1992, 1993; Pelkonen, Perala, &
Vehvilainen-Julkunen,1998).Accordingly, the proposed
new diagnosis, “ineffective family participation in profes-
sional care,” was defined by the authors as ”family mem-
bers’ inadequate involvement in care programs as deci-
sion makers, caregivers, collaborators,and advocates.”
Defining Characteristics
The major defining characteristicsof this new diagno-
sis are (a) lack of attentiveness when an ill family mem-
ber is in a hospital, other healthcare setting, or at home;
and (b) lack of observable or verifiable behaviors indicat-
ing family involvement in care.
Lack of attentiveness when an ill family member is
in a hospital, other healthcare setting, or at home. It is
very difficult for families to accept that the person they
love is seriously ill and that they themselves are unable
to help. Nevertheless, mothers perceive their presence as
critical for keeping their children healthy and strong, and
families want to be able to spend time with their ill
members when they are hospitalized or institutionalized
(Jonsen, Athlin, & Suhr, 2000; Li et al., 2000; Maas et al.,
2001; Rehm, 2000). Families have been restricted, how-
ever, from caring for relatives in hospitals or institutions
by healthcare professionals and institutional rules
(Clarke, 2000; Specht et al., 2000). And even when family
members are at home, they may be restricted from caring
for them because of lack of social support, lack of knowl-
edge, financial problems, or their own reluctance (Lotus,
2000; Martinson & Leavitt, 1999; Riper, 1999; Schumacher
& Stewart, 2000).
10
Table 1. Defining Characteristicsof Ineffective Family
Participationin Professional Care
of attentiveness when an ill family member is in a hos-
pital, other healthcare setting, or at home.
Lack of the following observable or verifiable behaviors in-
dicating family involvement in care:
- involvement in mutual goal setting for care
- involvement in planning care
- collaboration in determining treatment
Lack of observable or verifiable behaviors indicat-
ing family involvement in care. Twelve minor defining
characteristics were developed by the authors: a lack of
(a) involvement in mutual goal setting for care, (b) in-
volvement in planning care, (c) collaboration in deter-
mining treatment, (d) involvement in making decisions
with client, (el interpretation of client’s needs, (0 advo-
cating for a client’s needs when the client is not able to
do so, (g) providing hands-on care, (h) providing emo-
tional support, (i) providing social activities for client, (j)
evaluation of effectiveness of care, (k) idenhfylng factors
that affect care, and (1) providing information to health-
care teams (Friedemann et al., 1997; Li et al., 2000; Schu-
macher, 1996; Schumacher & Stewart, 2000). The defin-
ing characteristics of ineffective family participation in
professional care are summarized in Table 1.
Related Factors
Client factors. When a family member is diagnosed
with a chronic health condition, a life-threatening cir-
cumstance, or disease relapse, families experience feel-
ings of powerlessness, meaninglessness, and hopeless-
ness, and they are highly dependent on healthcare
professionals (Dixon, 1996; Jonsen et al., 2000; Knafl et
al., 1996). Two client factors emerged: client age and
client health status (e.g., chronic illness, life-threatening
illness, relapse).
Nursing Diagnosis Volume 13,No. 1,January-March,2002
 Individual family factors. Individual family mem-
bers have various feelings toward the affected family
member, including guilt, fears about the future, low ex-
pectations, low self-esteem, and low self-confidence.
These feelings influence family members’ attitudes to-
ward the disability and their own ability to cope (Jonsen
et al., 2000). Seven individual family factors were devel-
oped: (a) negative family attitude toward the disability
or condition, (b) lack of family confidence in their ability
to cope, (c) uncertainty about the future, (d) feelings of
powerlessness, (e) impaired health status of family mem-
bers, (f) deficient knowledge level of family members
about care skill, and (g) lack of autonomy (i.e., tendency
to be dependent on healthcare team).
Family system factors. If a family member needs
some special care at home or must be placed in an insti-
tution, family caregivers must develop a different role in
the care of their relative. Unfortunately, families usually
do not know how to change from direct care tasks to a
more indirect and supportive interpersonal role (Maas et
al., 2001; Specht et al., 2000). Some of the families were
using their religious faith and strong family ties to cope
successfully with the ongoing stresses of caring for their
relatives (Leavitt et al., 1999; Martinson & Leavitt, 1999;
Rehm, 2000; Riper, 1999; Specht et al., 2000). Other fami-
lies have competing needs among members or commu-
nication problems within families during an illness pro-
cess that can interfere with a family’s participation in
decision making and caring (Jonsen et al., 2000; Lotus,
2000). Six family system factors were developed: (a) cul-
tural differences between family and the dominant cul-
ture,(b) family health beliefs, (c) lack of spousal support
in caring, (d) insufficient support of extended family, (e)
competing needs of family members, and (0 communi-
cation problems within the family.
Socioeconomic factors. Until recently, people were
expected to be the passive recipients of nursing care
(Biley, 1992) and families were unaccustomed to working
collaboratively with professionals (Jeppson & Thomas,
1999). Many families have extensive and complex re-
sponsibilities for health and illness-related care, so they
are particularly vulnerable to lack of support and per-
Nursing Diagnosis Volume 13,No. 1,January-March,2002
ceived criticism from healthcare providers (Riper, 1999).
Three socioeconomicfactors were identified: (a) expected
passive recipient role, (b) insufficient community sup-
port systems, and (c) insufficientfinancial support.
Health access factors. Family members may meet -is-
tance from staff members when attempting decision mak-
ing, protective care,or other aspects of a new role (Maas et
al., 2001; Patterson & Hovey, 2000; Specht et al., 2000).They
may be ignored by healthcare professionals and treated
without sensitivity or respect for their concerns (Friede-
mann et al., 1997). Additionally, institutions and hospitals
are often characterized by day-to-day rules, regulations,
and formal or informal sttuctures that make family partici-
pation difficult. These can pose real barriers to both the
provision of services and the active participation of fami-
lies in the system (Jeppson & Thomas, 1999; Specht et al.).
CIarke (2000) mentioned the inconsistencies in visiting
policies, and Bruce and Ritchie (1997) noted a lack of com-
munication, no encouragement or instruction of involve-
ment, and no education/information regarding the barri-
ers to family-centered caw in nursing homes. Accordingly,
seven health access factors were developed: (a) insufficient
or unreliable information, (b) inadequate access to needed
information, (c) inadequate resource acquisition, (d) lack of
educational programs for caring, (e)inconvenient access to
the care system, (0 hospital or healthcare setting policies,
and (g) beliefs and attitudes of healthcare providers. The
related factors of ineffective family participation in profes-
sional care are summarized in Table 2.
Comparison to Existing Diagnoses
Compromised family coping, disabled family coping, ineffec-
tive family therapeutic regimen management, caregiver role
strain, interrupted family process, and noncompliance are
current NANDA diagnoses that address disrupted fam-
ily functioning. Compromised family coping, disabled family
coping, and interrupted family process focus on the emo-
tional problems and coping of family. Caregiver role strain
focuses on the caregiver’s felt or exhibited difficulty in
performing the family caregiver role. Ineffective family
therapeutic regimen management focuses on the specified
11
Ineffective Family Participation
- in Professional Care: A Concept Analysis of a Proposed
Nursing Diagnosis
Table 2. Related Factors of Ineffective Family
Participation in Professional Care
Client factors
H Age
rn Health status (e.g., chronic illness, life-threatening illness,
relapse)
Individual family factors
H Family attitude toward the disability or condition
H Lack of family confidence in own ability to cope
rn Uncertainty about the future
Feeling of powerlessness
rn Health status of family members
H Knowledge level of family members about care skill
Family system factors
H Cultural differences between family and the dominant
culture
rn Family health beliefs
H Lack of spousal support in caring
rn Insufficient support of extended family
Competing needs of family members
H Communication problems within the family
Socioeconomic factors
H Expected passive recipient role
H Insufficient community support systems
Insufficient financial support
Health access factors
H Insufhcient or unreliable information
rn Inadequate access to needed information
H Inadequate resource acquisition
rn Lack of educational programs for caring
w Inconvenient access to care system
w Policies of hospital or healthcare setting
skill in caring, and it is defined as a pattern of regulating
and integrating into family processes a program for
treatment of illness and the sequelae of illness that is un-
satisfactory for meeting specific health goals. Noncompli-
unce needs to be reconsidered as a nursing diagnosis, be-
cause it reflects the passive role of family or client.
Accordingly, the definition, defining characteristics, and
12
related factors of the proposed diagnosis, "ineffective
family participation in professional care," are differenti-
ated from other diagnoses related to family.
Conclusion
Since the concept of family-centeredcare was developed,
new challenging views have replaced traditional ones.
These include the notions that the family is the center of the
healthcare system, that family members should be the pri-
mary decision makers, caregivers,and advocates for their ill
relatives, and that the family is the collaborative and non-
hierarchical partner of healthcareproviders. Nurses are in a
unique position to assist families who have members with
acute or chronic problems in all health- settings, and it is
time for nurses to consider how to help families parlicipate
in the care of their family members (Bruce & Ritchie, 1997;
Cohen, 1999; Friedemann et al., 1997; Jeppson & Thomas,
1999;Maas et al., 2001; Specht et al., 2000).
Since 1982, the language of nursing diagnosis has
been used as a powerful vehicle that enables professional
nursing to move forward. But the existing diagnoses re-
lated to family do not reflect the challenging issues of
family involvement in the care of their relatives.
The new diagnosis, "ineffective family participation in
professional care," would be very useful. It can be linked
to relevant nursing interventions and nursing outcomes
developed by the Nursing Interventions Classification
(McCloskey & Bulechek, 2001) and the Nursing Out-
comes Classification projects (Johnson, Maas, & Moor-
head, 2000). By using this diagnosis, nurses would be
better able to encourage families to be involved more ef-
fectively in the care of their ill family member. As with
other nursing diagnoses, the proposed one must be re-
search-based and clinically validated.
Author contact: arlee&ky.wkhc.ac.kr, with a copy to the
Editor: rose-mary8earthlink.net
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