Page 540 - Encyclopedia of Nursing Research

TERMINAL ILLNESS n 507

it is recommended that health care provid- when used to indicate the satisfaction with
ers pay more attention to the health status of care of the terminally ill person. At the same
the informal provider. In a grounded theory time, there is no easy answer as to how satis- T
investigation of the nurse-facilitated empow- faction with care of terminally ill persons is
ering intervention of 24 family caregivers to be measured, given the fragile condition of
of terminally ill patients, it was found that persons nearing the end of their lives.
information, education, encouragement, and Research with the terminally ill, as
support were required by these caregivers with other patients, demands the calcu-
(Mok, Chan, Chan, & Yeung, 2002). The role lation of a risk/benefit ratio. In this case,
of communication is underscored in numer- the research may not benefit the individ-
ous studies (Marco, Buderer, & Thun, 2005). ual participant but it may be of benefit to
Caregivers of terminally ill children, future terminally ill persons. given the
usually parents, present both similar and condition of terminally ill persons, qualita-
distinctive issues. Factors that influence how tive research has been favored as a method
families navigate this terrain include the of inquiry. That leaves the question of the
relationship with health care providers, the generalizability of the results; quantitative
availability of information, and the effec- methods are important for future studies.
tiveness of communication between parents Kirchhoff and Kehl (2007) and Schulman-
(Steele, 2002). Being a good parent by making green, McCorkle, and Bradley (2009) dis-
unselfish decisions for the child was under- cuss some of the challenges in patient
scored in a recent study (Hinds et al., 2009). recruitment and research methodology for
Repeatedly, in the research on caregivers end-of-life research As the research results
of terminally ill persons, the need for infor- accumulate, the translation of the research
mation, communication, and good listen- findings into practice will enhance the care
ing has been stressed (Andershed, 2006). In of the terminally ill.
Norway and Sweden, using 45 forced choice, With the introduction of palliative care
open-ended questions, researchers found earlier in the disease process, questions of
that respondents supported ongoing disclo- compensation inevitably occur (De Fanti,
sure of information to terminally ill patients 2010). As with hospice care, the question
(Lorensen, Davis, Konishi, & Haugen Bunch, arises as to whether the organization of the
2003). This contrasts sharply with the parts care is directed to containing the costs of care
of Europe and Japan where it is the custom or meeting the needs of the patient and fam-
to speak with the family rather than the ily. If the latter is not achieved, there will be
patient. Clearly assessing patient and family reluctance to accept such services.
preferences with regard to communication is Finally, is palliative care beneficial for the
essential. patient? A study by McKechnie, MacLeod,
In research on the subject of the experi- and Keeling (2007) explored the dying pro-
ences of the terminally ill person, caregiv- cess of seven women with carcinoma receiv-
ers often serve as the source of information ing palliative care using qualitative research
about the end-of-life experience of their fam- methodologies. uncertainty throughout the
ily member. Quality of care and satisfaction diagnostic and treatment process as well as
with care are measured by reports of family their freedom from distressing symptoms
members regarding the patient’s experience. marked their experience. “Living until you
Hinton’s (1996) reinterview of 71 relatives die” was not achieved for these research par-
showed that there is variable agreement ticipants. In addition, with withdrawal from
with earlier statement made by these same usual activities, dying persons experienced a
individuals. This raises a question about the form of “social death.” The authors conclude
validity and reliability of such measurement that “whether one has a ‘good death’ or not is