Family-Centred Care

The family-centred model of care, developed during the early 1990s, primarily in North America, in the area of children’s nursing, considered incorporating the family was fundamental to the care of the patient.¹⁶ Over the past two decades, the scope and extent of family-centred care has broadened and the Institute for Family-Centered Care defines family-centred care as ‘an innovative approach to the planning, delivery, and evaluation of healthcare that is governed by mutually beneficial partnerships among healthcare providers, patients and families’.¹⁷ Patient-and-family centred care applies to patients of all ages, and it may be practised in any healthcare setting.

Family-centred care is founded on mutual respect and partnership among patients, families and healthcare providers. It incorporates all aspects of physical and psychosocial care, from assessment to care delivery and evaluation.¹⁸ Healthcare providers that value the family/patient partnership during a critical illness strive to facilitate relationship building and provide amenities and services that facilitate families being near their hospitalised relative.¹⁹ When a clinical unit’s staff embrace a family-centred care philosophy and partner with families and make changes to the physical environment such as improved privacy and aesthetically pleasing decor, it can have the added advantage of positive culture changes for the staff. This indicates there is a benefit beyond the family members for whom the changes were initiated.²⁰

In trying to understand family-centred care, neonatal and paediatric ICU studies have focused on parents’ perception of care in the three key components of family-centred care: respect, collaboration, and support.^21–23 In the area of respect, families rated ‘feeling welcome when I come to the hospital’ and ‘I feel like a parent, not a visitor’ most highly.²¹ Within the area of collaboration, feeling well prepared for discharge and being given honest information about care were rated the highest. The familiarity of nurses with the special needs of patients was rated highest in the area of support.²¹

Strategies to improve family-centred care within adult critical care areas include involving family members in partnering with the nursing staff to consider the involvement they would like which may include providing fundamental care to their sick relative.²⁴ Family members can decide in consultation and negotiation with the bed-side nurse the care that they want, and are able to provide; this may vary from moisturising their relative’s skin to a full sponge and will require negotiation. This act of caring allows family members to connect in what they see as a meaningful way with their sick relative. In addition, it can also improve communication with critical care nurses and facilitate close physical and emotional contact with their relative.²⁵ An independent nursing intervention such as partnering with family to provide care provides an understanding of how to operationalise a family-centred care model in the clinical setting and assists in the evaluation of other future interventions directed to improve an area’s family-centred approach. Further research on the benefits of family-centred care is needed in all critical care areas.^24,26,27

It is greatly acknowledged that taking care of critically ill patients requires considerable knowledge and skill. When family members are incorporated into the caring paradigm, as advocated within family-centred care, health professionals equally need specific knowledge and skills.²⁸ This should be initiated in foundation degrees, postgraduate studies and via ongoing professional development opportunities.²⁸ A feature of family-centred care that makes it desirable in the critical care setting is how it strives to meet the needs of family.²¹

Communication

The ability to communicate effectively is an underlying tenet of nursing practice and a fundamental need for people. As mentioned previously in the context of caring for family members, for communication to occur, there needs to be a two-way passage of ideas or information. In the patient context the inability to communicate causes, or adds to, anxiety, frustration and stress^74–76 as they lose control over their life and decisions.⁷⁷ It is therefore imperative for health care professionals to find ways to communicate with patients. Critically ill patients commonly have communication difficulties due to either mechanical devices (e.g. endotracheal tubes),⁷⁴ cognitive impairment from the disease and/or pharmacological medications or language difficulties.⁷⁸ Therefore, effec-tive communication is challenging, and nurses need additional knowledge and understanding of these complex situations to meet medicolegal obligations and to assist in meeting the key information needs of patients and families.⁷⁹ As many critically ill patients are unconscious, it is important to understand the need for verbal communication to continue. Such communication did not occur in one Jordanian setting where in-depth interviews and observations used in three critical care areas identified that nurses communicated less with unconscious patients than with conscious patients.⁸⁰ It has been known for decades that sedated and unconscious patients can hear and recall some verbal communication once they regain consciousness.^81,82

Meeting information needs builds trust between the nurse and patient and their family as a relationship develops.⁷⁹ The nurse’s understanding of the person behind the patient is important to families, and can be achieved by talking to the family about the patient’s life before the illness.⁸³

Good communication is a prime patient need and inspires patient confidence, making patients feel safe.⁸⁴ When nurses reassure patients they provide a sense of hope and a feeling of safety, which is further supported by family members’ presence and the patients’ religious beliefs.^77,84 Constructive strategies should be identified to overcome difficulties with patient communication. This is worthwhile pursuing as it reduces both nurse and patient frustration and improves nursing care.⁷⁵ The following methods of communication may be used individually or together to enhance communication, and should be readily employed in critical care settings:^74,85

Although electronic voice output communication aids are used with disabled children and adults, they have not been evaluated sufficiently with an ICU population. These aids use prerecorded digitalised voice messages or synthesised speech, with the phrases accessed by the patient via a computer screen or keyboard.⁸⁵ This device would be restricted to those patients who are dexterous and able to select an appropriate key, which limits its utility in the ICU setting. However, some patients in a small study found electronic voice output beneficial, particularly when communicating with family.⁸⁵

An effective strategy to promote good communication is for health professionals to seek and maintain eye contact (if culturally appropriate). This may mean the nurse or doctor sitting down on a chair beside the bed to facilitate face-to-face communication.⁷⁹ This act also conveys a sense of the importance the health professional is placing on the interaction by taking time to ensure they understand each other. Associated with this is the need to use commonly understood language. One method of checking patients’ responses is to repeat these back to them. A quiet environment reduces extraneous noise and potential interruptions, and may promote communication and concentration. Codes may also be developed by the nurse and patient, with facial expression, head nods and eye blinks used to respond to questions.⁷⁵ These codes should be passed on to the next nurse and recorded in the patient’s notes to promote continuity of care.

When communication seems unsuccessful, talking loudly will not improve the interaction; one good strategy is for the nurse and patient to agree to try again later.⁷⁵ Communication can also occur through physical contact, and touch often communicates empathy and provides spiritual comfort.¹ Spiritual needs may further be met by providing comfort, reassurance and respect for privacy, and by helping patients relate to others.⁸⁶

Language barriers may necessitate the assistance of an interpreter with knowledge of healthcare terminology to ensure the content is adequately translated. An independent person ensures that the patient receives the message in its entirety from the health professional.⁷⁹ Interviews with previously intubated patients after discharge from the ICU capture, from the patients’ perspective, issues with communication and highlight the need for further improvement and understanding of the two-way process. An example of this was from an ex-patient, who related her situation: ‘They would come into the room in masses to talk to me. One doctor would stand there and read off a summary: “[Subject’s name], we find her this and that”, and they’d be saying stuff and I’d think “Oh no!” They would ask me, “Do you understand?”, “Are there any questions?” And I … “I don’t even know what you just said; how do I know if I have questions or not?” ’.⁷⁷ In this case, both parties were speaking to the other, but it was apparent that the patient was not able to take in and process the information about her current condition and therefore had difficulty comprehending. Basic principles of patient autonomy and respect need to be used cautiously with critically ill patients who may appear competent, when in reality their cognitive ability is impaired.⁹ Effective communication with the family is vital in order to determine the cultural beliefs and practices of patients and their family to further enhance communication and understanding.

Defining Culture

Wepa describes culture: ‘Our way of living is our culture. It is our taken-for-grantedness that determines and defines our culture. The way we brush our teeth, the way we bury people, the way we express ourselves through art, religion, eating habits, rituals, humour, science, law and sport; the way we celebrate occasions … is our culture. All these actions we carry out consciously and unconsciously’.^{87, p. 31} Simply, culture refers to the values, beliefs and practices that an individual, family members and nurses undertake on a daily basis. It determines how the world is viewed, and their orientation to health, illness, life and death.^88–90

Culture involves a shared set of rules and perspectives acquired through the processes of socialisation and internalisation, which provide a frame of reference to guide how members interpret such phenomena as health and illness and death and dying. This in turn influences their actions and interactions.⁹¹ Culture is a more specific way of describing how groups of people function on a daily basis, influenced by their beliefs, relationships and the activities they engage in.

Understanding that culture, ethnicity and race are not the same thing is crucial to meeting the cultural needs of patients and their families. Race is generally determined on the basis of physical characteristics and is often used to socially classify people broadly as Caucasians, Europeans, Polynesians or Asians, for example.^87,92 However, assigning people to a homogeneous group is problematic, the antithesis of cultural diversity,⁸⁷ and does not account for the diversity that exists within many groups in contemporary society. Ethnicity extends beyond the physical characteristics associated with race to include such factors as common origins, language, history and dress – it is usually associated with nations,⁸⁷ although a number of ethnic groups may exist within a nation.

Differing World Views

Culture influences how people view the world, what they believe in and how they do things, particularly with regard to practices around health, dying and death. The critical care environment is unfamiliar for patients and families, especially as health professionals’ beliefs, practices and world views may not align with their own. What is important for critical care nurses may not be important for the patient or the family, and may lead to tension and dissatisfaction when the way patients’ and families’ views are at variance. This does not mean that one world view is necessarily more right or wrong – they are different.

The biomedical model influences the way healthcare services are structured and delivered.⁹³ As a dominant model it heavily influences the necessary focus on the physical wellbeing of patients within critical care environments. Focusing on the management of disease and illness, and using processes that lead to health issues being fragmented and reduced to presenting signs and symptoms and diagnoses, risks excluding what is important for the patient and family.⁹⁴ This contrasts with indigenous cultures, for example, which tend to have a holistic eco-spiritual world view, with a strong spiritual dimension that extends beyond a disease and illness focus.⁹⁵ The world view of critical care nurses is influenced by the cultural beliefs, practices and life circumstances of each nurse, and the ‘world view’ of the critical care service that drives its service delivery. The result is that consequently, patients and their families become sandwiched between differing world views.

Research highlights the lack of alignment that can occur between the needs of consumers of health services and the intentions of healthcare providers such as nurses.⁹⁶ It is the potential for the non-alignment between patients and families and healthcare providers that critical care nurse need to be aware of, as dissatisfaction with the care being delivered may arise when the patient’s and family’s needs are not recognised or attended to,⁹⁷ leading to unnecessary tensions and conflicts between patients, families and nurses. A nurse’s willingness to acknowledge and respect patients’ world views and the things that are important to them minimises the occurrence of any dissatisfaction,⁹⁴ as it values their specific needs during their critical care experience.

Where the world views of patients and families are considerably different from that of the nurse, Ramsden urges nurses to identify the beliefs they hold about the patient and family, the impact of these interactions on the patient and family, and the power the nurse can utilise during such interactions.^98,99 Sometimes the nurse’s personal beliefs will be in conflict with professional nursing beliefs, which necessitates choosing between personal and professional beliefs in the practice setting. For example, a nurse’s personal beliefs about life, death and body tissues may be compromised by the duty to care for a patient with brain death awaiting the removal of organs for transplant. This may also be compounded by nursing staff shortages, less-than-desirable skill mixes, and the acuity and complexity that critical care nurses are faced with on a daily basis. Therefore, it is vital, not only for the individual nurse, but also for the team of critical care nurses to develop strategies that can optimise the development of working relationships with patients from different cultural backgrounds.

Cultural Competence

Different models exist to assist in the integration of the cultural beliefs and practices of patients and their family in critical care nursing practice. For example, Leninger’s cultural care diversity and universality theory⁸⁹ requires nurses to deliver culturally congruent nursing care for people of varying or similar cultures. Ramsden’s work on cultural safety^98,99 focuses on the delivery of nursing care to patients (whose cultural beliefs and practices differ from that of the nurse) that is determined appropriate and effective by the patients and families who are the recipients of that care. These models have been used to guide nursing practice in Australia and New Zealand, respectively. Such models require that critical care nurses recognise patients’ and families’ views of their health experience⁹³ and any that subsequently have discordant priorities. Wood and Schwass have described three levels at which a nurse may practise with respect to cultural issues (see Table 8.2).¹⁰⁰ These levels, ranging from cultural awareness to cultural safety, describe the differing characteristics of nurses’ cultural care. For example, a nurse practising in an organisation where cultural safety was required would need not only to recognise differences between groups of people, but also to deliver differing cultural care to individuals after undergoing appropriate education.

TABLE 8.2 Levels of cultural practice¹⁰⁰

From a transcultural nursing perspective, culturally competent nursing care requires the nurse to incorporate cultural knowledge, the nurse’s own cultural perspective and the patient’s cultural perspective into intervention plans.⁹⁰ However, Ramsden argued that it is not possible to collate cultural knowledge specific to various groups owing to the diversity that exists both among and within groups.⁹⁸ Therefore, critical care nurses are advised to critically examine theories and models to guide their practice, to ensure they deliver appropriate and effective care for the patients and families they work with.

Competence is an important dimension of nursing practice, as it provides users of nursing services with confidence in nurses’ knowledge, skill and attitudes necessary to undertake their practice. Given the importance of culture in the delivery of nursing care, the measurement of cultural competence is also important. There is evidence of numerous variations on the concept of cultural competence.^101–103 The attributes of cultural competence include cultural awareness, cultural knowledge, cultural understanding, cultural sensitivity, cultural interaction and cultural skill.¹⁰¹ However, the inherent need for the acquisition and use of culturally specific information limits the application of these attributes: the collation of culturally specific information is becoming increasingly problematic as our communities become more diverse in their composition.

Cultural competency is about practising in a sound manner rather than about behaving correctly.¹⁰⁴ Durie encouraged the development of cultural safety (which focuses on the experience and determination of the appropriateness of care received), to a construct that can measure the capability of the health worker, such as the critical care nurse.¹⁰⁴ Culturally competent nursing practice is about:

Cultural competence provides a framework to objectively measure the nurse’s performance. The ability of the critical care nurse to deliver culturally competent and safe care is dependent on determining the cultural needs of patients and families, and the provision of patient-centred, individualised care.

Determining the Cultural Needs of Patient and Family

The concepts of health and illness are generally constructed within the context of people’s sociocultural environment and the groups they belong to; these vary from person to person and group to group. To this end, culture influences how health and illness experiences are constructed and lived. When people become critically ill, their cultural beliefs and practices can be just as important as their physical health status.¹⁰⁵ Yet cultural beliefs and practices are often compromised when healthcare providers’ concern about physical health takes precedence – invariably, health services also do things differently than patients and families would do them. While the importance of psychosocial and cultural needs is the focus of this chapter, the presence of life-threatening events or crises experienced by the patient in critical care must rightfully take precedence. However, on stabilisation of the patient, creating a positive working relationship with the family can facilitate the determination of their perspectives and needs and negotiation about how these can be included in a potentially complex plan of care. Incorporating cultural requirements becomes vital in a delivery of nursing care that is both appropriate and acceptable. Therefore, given the nature of critical care settings, the quality of interactions with the patient’s family is just as crucial as interactions with the patient.

Promoting a genuine, welcoming atmosphere and the use of effective communication invites the family to be involved early in the patient’s critical care experience, and is essential to determine the cultural needs of the patient and family. While communication has been mentioned earlier, interpreting cultural needs requires the critical care nurse to be attentive to communication. Nurses are advised to talk less, attend to details that may arise, and simply listen. The need to intervene and to dominate discussions and ‘interviews’ with the family¹⁰⁷ from the nurse’s perspective needs to be curbed, so time is made available for cultural beliefs and practices to be shared.^20,94,105 Understanding and supporting the patient and family can be improved by the nurse’s empowering them through the processes of listening, understanding and validating what they have to say.^106,107 Conning and Rowland’s research on the attitudes of mental health professionals towards management practices and the process of assessing patients and decision making found that those who had a greater ‘client orientation’ (versus management orientation) were more likely to engage in assessment processes that facilitate patient-centred, individualised care.¹⁰⁸

Working in partnership with a family can bridge the cultural ‘gap’. However, this is not always easy to achieve in challenging situations, such as when various members of a large family come and go, compounded by changing nurses with shift changes. Receiving clear and consistent messages about the patient, including his/her progress from all members of the health care team, can reduce cross-cultural confusion and misunderstanding, especially as messages are prone to distortion and change when many are involved. A strategy to manage this may involve discussing the management of information dissemination with the family, and the identification of one or two family members who become the point of contact through which staff discuss and communicate information about the patient.⁹⁴ Often apparent ‘cultural conflicts’ will arise as a result of communication problems with the family; communicating information in a clear and understandable manner helps prevent these problems from occurring.

Individualised Care

‘Individualised care requires the patient and nurse to work together to identify a path towards health that maintains the integrity of the patient’s sense of self and is compatible with their personal circumstances’.^{109, p. 46} This means the critical care nurse ideally working in partnership with the family to identify important cultural beliefs and practices that need to be observed during the patient’s critical care experience; in other words eliciting a patient’s view to individualise care.¹¹⁰ It is recognised that ‘the work’ of the nurse involves responding, anticipating, interpreting and enabling, all of which are crucial for individualised care.¹¹¹ Indeed, partnership requires the nurse not only to work with the patient and family but also to identify the power that the nurse possesses and the potential for its inadvertent misuse.⁹⁴

Facilitating the inclusion of cultural beliefs and practices requires them to be identified and then incorporated in an individualised plan of care. However, given the resource constraints and the culture of some health services, universal approaches to planning care may be adopted for convenience. The critical care nurse is discouraged from adopting a ‘one-size-fits-all’ approach to nursing practice, as this disregards the cultural systems of the patient and family.⁹⁴ Individualised care is optimised by nurses having sufficient information about the patient and family in order to identify the needs and plan interventions. Incorporating each family’s cultural beliefs and practices provides a ‘bigger picture’ of the patient¹⁰⁵ than would have been gained by simply focusing on the presenting disease or illness and its management. Such an approach to individualised care enables the critical care nurse to become familiar with the context of the patients’ life circumstances and how they interpret illness, and also improves the quality of care and interactions they have with patients and families.^112,113