Family Involvement in the Care of Hospitalized Elderly Patients

Safety and Quality in Patient Care

There was a perception that the presence of the family in hospital and their involvement in the care of elderly patients contributed to quality patient care by safeguarding the patient, advocating for their individual care needs, bridging the gaps in care provision, facilitating the continuity of patient care, enhancing the patient–provider relationship, and releasing nurses’ time to more important care activities.

Unplanned and Unstructured Patient Care Participation

Although analysis of the interviews suggests that the presence of family members at patients’ bedside provides many great benefits, the second main theme emerged from data indicates that overall family participation in elderly patient care was undertaken in an unorganized and unplanned manner. This theme included the subthemes of “conflicting role expectations” and “being involved in potentially unsafe and stressful caregiving activities”.

Safety and Quality in Patient Care

The findings of this study provided further evidence that hospitalization is often a stressful experience for elderly patients. They commonly experience feelings of fear, stress, loneliness, and lack of trust, and therefore, need to be well supported throughout the hospitalization process (Huckstadt, 2002). In the current study, emotional and psychological support emerged as the main reason why the family wanted to stay with their elderly patient in hospital. Nurses, patients, and families consistently commented that the presence of a family caregiver at patient bedside provided the patient with emotional support and eased the process of hospitalization for the patient. These findings are consistent with the results of previous studies suggesting that the family is present in the hospital due to the special needs of elderly patients for emotional and psychological support and because the family doubts that these needs will be fully met by hospital staff (Lyytinen et al., 2002). By being present in the hospital and providing care and support from different aspects, families help maintain familiar routines for patients, which are considered an important aspect of the elderly care, facilitating an easier care transition from home to an acute care setting (Molazem et al., 2011).

Nurses and familes similarly commented that elderly patients were not receiving optimal care for a range of reasons, such as poor nurse-to-patient staffing ratios, the task-oriented health care system, and the failure of nursing staff to meet patients’ individual care needs. By being present in the hospital, the family was able to identify and act upon the shortcomings of the health care system and felt responsibilities to fill up the gap in care provision. Confirming the findings of Li et al. (2000), family caregivers believed that in circumstances where there was nurse shortage or the quality of health care services was poor and could not be trusted, they needed to bear more responsibilities for the patient. Hence, families chose to stay in hospital to remedy the shortcomings and fulfill the unmet patient care needs. The culmination of these findings and other studies (Khademi, Abedi, & Alimahamadi, 2007; Molazem et al., 2011) may suggest that the health care system in Iran is failing to deliver a satisfactory level of care to elderly patients and has implications for the health care policy makers to promote education and training in geriatric nursing.

During their stay in hospital, families had witnessed various unsafe practices on their or other patients, compelling them to take more responsibility in protecting their patient. Similar to previous reports, in current study, families felt responsible for ensuring that their patients’ health care needs were sufficiently addressed by the health care team and the patient was receiving an appropriate and adequate level of care and treatment. They advised the staff on delays in care provision and participated in the monitoring of their patients and timely reporting of incidents. The controlling and evaluating role of the family has been previously documented in the literature (Li, 2005; Li et al., 2000).

Also confirming previous research (Huckstadt, 2002; McCabe, 2004), our findings reflected a poor nurse– patient relationship. Cognitive and functional declines in the elderly, ineffective previous attempts to communicate, and lack of competency in speaking Persian language—the official language of Iran—were some identified barriers hindering elderly patients from communicating their needs effectively with the health care team. Further, gender and modesty were common cultural impediments to an effective patient–provider communication. These barriers tend to be common in the Middle Eastern culture where patients are more likely to feel disempowered to express their dissatisfaction or voice complaints about health care systems. Patients usually feel embarrassed to take staff’s time and attempt to avoid being labeled as “difficult”(Gholizadeh, Salamonson, DiGiacomo, & Davidson, 2009; Macdonald, 2007). Expectedly, elderly patients, in current study, were reluctant to ask for help from hospital staff and felt more comfortable to ask for assistance of their family members.

Likewise, nurses found it difficult to communicate effectively with patients due to cognitive and functional deficits in older patients. Further, the high workload hindered effective communication between nurses and elderly patients. Reasonable nurse–patient staffing ratios and adequate training of the health care team on elderly care, which also includes strategies to promote communication between nurses and patients are likely to improve the quality of care for older patients (Stewart et al., 2000).

During the course of hospital stay, families were exposed to useful patient information and learnt new skills that they could apply at home. The obtained knowledge and skills to facilitate a smooth patient-care transition from hospital to home setting. Thus, nurses can use the unique opportunity to work collaboratively with patients and families to develop and implement a comprehensive discharge plan based on patients’ specific needs and family resources (Li, 2005). Yet, inconsistent with the results of a study by Li et al. (2000), in the current study, there was no mention of nurses using the knowledge and skills of family caregivers to improve the quality of care for elderly patients. Li et al. (2000) reported that families applied strategies to increase patient trust and collaboration with the health care team and provided the health care staff with valuable information concerning the patient’s condition, which helped establish a care partnership between formal and informal caregivers in acute care settings (Li et al., 2000).

Unplanned and Unstructured Patient Care Participation

Although family participation in the care of elderly patients was overall perceived as beneficial by study participants, some conflicting role expectations between nurses and family caregivers were identified. This was particularly evident in provision of personal patient care, in that nurses expected family members who stayed with the patient in the hospital to take responsibilities in providing personal care to their patients, such as bathing, changing soiled linens, feeding, and helping out with patient ambulation. It is noted that in the health care system of Iran, the registered nurse is not often clinically involved in patients’ personal care and it is the responsibility of the nurse’s assistant to deliver this aspect of patient care (The Iranian Nursing Organization, 2012). Yet, due to a shortage of nurse assistants and their negligence in the hospitals where this study took place, family members were expected to provide personal patient care. This was not particularly welcomed by families who held a view that nurses should complete the entire patient care. The existence of role conflict and role ambiguity resulted in inconsistency in care provision among nurses, family caregivers, and nurse assistants, creating a potential for the patient care to be compromised. This finding is consistent with previous research in Iran, suggesting that nurses possess unenthusiastic attitudes towards providing personal care to patients (Hamadanizadeh, Mottahedian Tabrizi, Sarhangi, & Zigheimat, 2008). Similar to nurses in other countries, Iranian nurses are rather distant from basic and initial care provision since they desire to be promoted and officially recognized (Nolan, Brown, Davies, Nolan, & Keady, 2006). Yet, patient personal care and nutrition play an important part in the holistic nursing (Crisp & Taylor, 2009) and deserve greater recognition in nursing education and elderly care. There is also an implication for developing clear role descriptions for registered nurses and nurse assistants.

The scope of family involvement in caregiving activities needs to be also clearly defined. Globally, health care systems lack a structured and well-planned approach as to how best to involve families in caregiving activities in acute care settings (Li et al., 2000) and this topic remains almost untapped in Iran. Molazem et al. (2010) suggest that in circumstances where the health care team fail to meet patients’ care needs, involving the family in caregiving activities seems necessary, however, the authors suggest that the main role of family caregivers should remain emotional and psychological support (Molazem, Ahmadi, Mohammai, & Bolandparvaz, 2008). Although this approach could remedy the shortcomings in health care, some families may not wish to become engaged in patient care, yet they continue to feel responsible for the patient to ensure that their patient’s care needs are adequately met by health care team (Lindhardt, Nyberg et al., 2008). Therefore, the involvement of families in care needs to be based upon their desire to become involved (Halm & Titler, 1990) and it should be mutually negotiated among the patient, family, and health care team. Involving the family in caregiving to inpatients regardless of their desire or aptitude may raise some ethical issues and needs to be clearly addressed and defined in health care systems.

Families reported being left by themselves to accomplish physically demanding patient-care activities, such as manual handling of the patient, without their ability being assessed or an adequate training provided, resulting in experiences of strain, stress, and dissatisfaction by the family caregivers. The burden of caregiving to elderly patients or patients with chronic health condition has widely been documented in the literature (Li, 2005; Lindhardt, Hallberg, et al., 2008). The stress and strain of new caregiving responsibilities in an acute care setting can add up to the burden of already overwhelmed family caregivers resulting in caregiver burnout (Li, 2005; Lindhardt, Hallberg, et al., 2008; Molazem et al., 2011). The family caregivers, in current study, perceived their role as rather supportive and supplementary than taking over some roles of nursing staff, a finding that supports previous research. Families value being involved in decision makings, becoming engaged in patient discharge plan, and receiving information and education regarding patient care which they can apply after discharge at home (Abedi, Mostafavidarani, & Riji, 2010; Lindhardt, Nyberg, et al., 2008). This is of paramount importance when it concerns frail and vulnerable elderly patients, who might be incompetent or reluctant to participate in decision-makings related to their care and prefer their family to become involved in the care process (Bridges, Flatley, & Meyer, 2010; Lindhardt, Hallberg et al., 2008). Thus, it is important that family involvement in patient care and decision-makings to be individually negotiated with the patient and family. Effective participation of patients and families in health care process, has been shown, helps relieve anxiety in the patients and families (Bridges et al., 2010). In our study, there was no mention of family involvement in decision-makings related to the elderly patient care, possibly because it is not a common practice in Iran. It can also be related to the fact that nurses often lack authority to develop patient-care plans in this country. In developed health care systems, patient involvement in decision making regarding their care is an established patient right (Crisp & Taylor, 2009), however, family caregivers’ involvement in these decisions needs to be clearly defined and evaluated.

In our study, excerpts from both nurses and families indicated that family members became, at times, involved in specialized nursing care, such as suctioning and NG tube feeding of patients in the hospital setting. This type of family participation in care in acute care settings have not been frequently mentioned in the literature (Halm & Titler, 1990). A study by Halm and Tilter (1990) reported of family members being involved in suctioning and Hickman line care with guidance from nursing staff (Halm & Titler, 1990). Nurses, in the current study, believed that adequate training and supervision of family caregivers was difficult, particularly when different family members became involved in patient care. Family members who did not receive sufficient training on delegated tasks and were not aware of hazards jeopardized both the patient’s and their own health. Molazem et al. (2009) suggest that the family might not fully understand patient health care needs or be able to provide the quality and/or quantity of care required, risking the patient’s safety and adding to the stress of caregiving (Molazem et al., 2008; Molazem et al., 2011). Family participation in patient care needs to be implemented with adequate training and monitoring to ensure safety for the patient and a positive experience for the caregiver (Molazem et al., 2008).

We found that family involvement in caregiving to elderly patients in acute care settings followed no rules and the level of participation varied significantly depending upon the attitudes and expectations of the nurse. On one end of the spectrum, some nurses hardly ever involved families in the patient-care process. On the other end, the family became involved in caregiving tasks beyond their skills and abilities. These findings are somewhat consistent with those reported previously by Lindhardt, Hallberg, and Poulsen (2008) who found that nurses possessed mixed attitudes and varying expectations about family participation in caregiving to inpatients. Overall, effective involvement of family in patient care was perceived to be a time-consuming process and nurses often considered engaging the family in patient personal care only (Lindhardt, Nyberg et al., 2008). Yet, nurses believed that if family involvement in caregiving to elderly inpatients is implemented in a structured and appropriate manner and includes adequate training and supervision, it helps improve the quality of patient care in acute care settings as well as facilitating continuity of care for elderly patients after discharge from hospital.