The Need To Be With And Keep Watch Over The Sick Relative

sudden illness, family members provide support in the best way possible, by being at the bedside and maintaining watch (Coulter, 1 989; Daley, 1 984; Plowfield, 1999). Carr and Clarke ( 1 997) who conducted an ethnographic study defined the need to maintain watch as vigilance and propose that vigilance demands the family pay constant attention to the needs of the ill member. In maintaining vigilance, by spending the hours beside the bedside, family members demonstrate a commitment to care (Carr & Clarke), which fosters better experiences of the hospitalisation (Giuliano et aI., 2000;

Rukholm et aI., 1 992). Furthermore, vigilance provides family members with a sense of control over the potential illness outcomes (Leske, 1 99 1 ; Rukholm et aI., 1 992; Twibell, 1 998), and, if possible, protects the patient from harm (Agazio et aI., 2003; Carr & Clarke, 1 997; Darbyshire, 1 994).

In the meantime, nurses frequently overlook the contribution that the patient's family can make toward care (Minicucci, 1 998). For example, Appleyard et al. (2000) were surprised that findings of their American research based on an

adaptation of family systems theory revealed that spouses demonstrated a commitment to spend more than 6 hours a day visiting a loved one in a coronary care unit, but do not explore this commitment to care in their study. Maintaining vigilance appears to serve two purposes for the relatives: letting the sick relative know they are there (Plowfield, 1 999); and allaying the fear that something will happen whilst they are away from the hospital (Leske,

1 99 1 ) . Both purposes require that there are opportunities for relatives to be physically close to their loved ones.

Proximity and being involved in giving personal care, or assisting in turning the patients, provide the relatives with consolation and assurance that they are contributing to the patient's recovery or comfort were findings from a British grounded theory study conducted by Coulter ( 1 989). Nurses who encourage the families to participate in patient care can also facilitate the families' ability to cope with the crisis (Twibell, 1 998). Twibell (1998) used the lalowiec Coping Scale's scores to measure the effectiveness of specific coping strategies. The value of providing personal care is especially significant if recovery is not likely (Twibell, 1 988). This proposal is supported by Appleyard et al. (2000) who argued that families not only find comfort in assisting with the personal care, they also provide a critical link to facilitate an understanding of the patient's needs. In addition to emotionally supporting the relatives, the opportunity to provide personal care assists the relatives in overcoming the fear of the technology that sustains life, and helps the relatives sustain hope (Chartier & Coutu-Wakulczyk, 1 989; Coulter, 1 989). In order to maintain vigilance and emotional contact, relatives need to have ready access to their sick relative (Appleyard et aI., 2000; Leske, 1 99 1 ; Plowfield, 1 999).

Although nurses appear to acknowledge the family role in maintaining vigilance, in much of the literature (Carr & Clarke, 1 997; Leske, 1 99 1 ; Minicucci, 1 998; Plowfield, 1 999) family members are at the mercy of the nurses to determine whether the family has the right to visit or to have

(Kosco & Warren, 2000). Other literature reports that nurses do not trust family members to visit in such a way that the visit will not be detrimental to the patient's health (Clarke, 2000; Leske, 1 99 1 ; Plowfield, 1 999). Nurses describe this detrimental visiting as wanting to sit by the patient, thus preventing the patient from sleeping. If relatives are reliant on permission

from the health professionals to visit their loved one, what happens to those who are from out of town and have few other activities to engage in during the day, or have to drive for a long time to see their sick loved one? Plowfield ( 1 999) reported that one family received permission to visit, drove for two hours only to be turned away at the door.

Relatives are not only at the nurses' mercy to determine whether they are able to visit, but nurses often determine the length of time that the family are able to stay in critical care units. Thus family members view visiting privileges as an indication of the prognosis (Plowfield, 1 999). These findings emerged from Plowfield's phenomenological study based in USA. In contrast, Merz ( 1 998) proposed in a position paper that allowing spouses some control over visiting hours and the hospital room environment gives family members a sense of control over the well-being of their sick relatives at a time when they feel powerless to manage their loved one's ill-health.

Not only do nurses alter the visiting hours, they also regulate them to meet nursing needs, such as restricting visiting rights during the hour-long change of shift discussions (Giuliano et aI., 2000), who used the Juran model to initiate a quality improvement programme in an American hospital.

Anecdotally, restriction to the length of time that a person may visit occurs in New Zealand hospital departments as well, including preventing visitations during change-over of shifts. Those staying at the non-local tertiary centre will need to find activities other than being by the bedside during that hour­ long period of time. Others, who may have driven some distance to see their relatives, could find that their time with the relative is limited i f they arrive during nurses' change-over times. Families who have driven to a non-local tertiary centre need to see the sick relative to determine for themselves the

patient's progress, and may perceive such visiting restrictions focus on the nurses' needs rather than on patients' needs. If relatives cannot visit the patient they need progress reports from the nursing staff.

Families argue that the receipt of progress reports assists them to come to terms with the severity of the illness, and provides them with the opportunity to gain a sense of control over the situation (Fareed, 1 996; Mellon &

Northouse, 200 1 ). These findings are supported by other researchers (Coulter, 1 989; Daley, 1984; Leske, 1 99 1 ; Medland & Estwing Ferrans, 1 998), who claimed that the families' need for progress information is most important of all needs when their relative is acutely ill. Relatives also measure nurses' competency by critiquing the nurse' s interpersonal skills (Fosbinder, 1 994). Supporting spouses, who have limited contact with the nursing staff or who can not get information from the nursing staff, feel that the spouse is being neglected, and that the health professionals are not interested in the family unit (Kettunen et ai., 1 999; Rantanen, Kaunonen, Astedt-Kurki, & Tarkka, 2004).

Nurses, however, view relatives' need for such information from nurses as disruptive to the provision of care (Medland & Estwing Ferrans, 1 998). Nurses wishing to concentrate on caring for the sick patient rather than the entire family, and who find attending to relatives' needs disruptive, have developed strategies to restrict the number of enquiries about the relatives' well-being (Appleyard et ai., 2000; Medland & Estwing Ferrans, 1 998). Such strategies include having lay people available to wait with the family during times of visiting, and structured times for family members to have telephone contact with critical care units, thus strengthening relatives' trust in the health professionals during the critical incidents.

The families trust health professionals to look after their sick relative in the hope of them receiving the best care. Relatives gain this confidence and trust in the staff during the time of maintaining watch as the health professionals care for the sick relative, and the family wait for positive outcomes (Carr &

and Minicucci ( 1 998) found that relatives rate reassurance that the patient is receiving the best possible care as one of the most important factors in reducing stress at this time. In fact, families argued that their need for assurances of receiving the best possible care as most important in the initial 72-hour period of acute crisis (Daley, 1 984). Other research confirms that family members want to know the relative is receiving the best care possible and express gratefulness that the relative is in expert hands (Plowfield, 1 999; Rukholm et aI., 1 992; Twibell, 1 998). In addition, in spite of their patient being transferred from regional hospitals, which resulted in long distance travel to support them, relatives in Plowfield's study put faith in the advanced institution. Plowfield ( 1 999) did not identify whether this group of people, some of whom she identified as over four hours drive away from home, had any specific needs. The social cost to family members of ensuring that their relatives received the best possible care were not clearly articulated.

Furthermore, none of these writers discussed the emotional strain facing couples that may be affected by non-local tertiary hospitalisation.