Family-centred care in intensive care units

Family-centred care (FCC) is a partnership approach to health decision- making between the family and the healthcare provider. FCC has been recognised by numerous medical societies, healthcare systems, legislative bodies and the Institute of Medicine as integral to patient health, satisfaction and healthcare quality. [1-3]

FCC was codified in 1992 by the Institute for Patient and Family- Centered Care in the USA, which described elements of FCC as recognising the family as a constant in the patient’s life and facilitating family-professional interactions at all levels of healthcare. It requires that the patient’s family participates and collaborates with healthcare professionals as partners in care. The concept emphasises that a patient’s healthcare decisions should be contextualised in terms of their broader life experiences. FCC is commonly used to describe optimal health as an experience of families. The term is frequently accompanied by terms such as ‘partnership’ and ‘collaboration’, and families as ‘experts’ to describe the process of care delivery. [1,4,5]

The provision of FCC in the intensive care unit (ICU), inclusive of neonatal, paediatric and adult units, is equally important as in the rest of the hospital’s establishment and has to be considered in the care of critically ill patients. ICU healthcare professionals should therefore incorporate family members into the provision of critical care. Critical illness of loved ones has enormous effects on their family members, with approximately one-quarter to half of family members of critically ill patients experiencing significant psychological symptoms, including acute stress, post-traumatic stress, generalised anxiety and depression, both during and after the critical illness of their loved one. [6-8] The combined impact on family members may result in what has been termed ‘post-intensive care syndrome-family’ (PICS-F). [9]

Furthermore, family members are often placed in the position of acting as surrogate decision-makers for critically ill patients, and support for and effective communication with family members will facilitate high- quality and ethical shared decision-making in the ICU. [9] In the neonatal intensive care unit (NICU), FCC shifts the attention from the disease alone to the patient in the context of their family and community. Family members, especially parents, are natural advocates for the neonatal patient for whom the emotional, social and developmental needs are serious and urgent. [10]

In addition, being involved in surrogate decision-making is associated with higher levels of distress among family members, and matching family preference with their role in decision-making may reduce this stress. Patients often want family members involved in decision-making about their care, and most patients with chronic illness report that their family members’ perspectives are important in their care decisions. Involvement of patients’ families is especially important in the ICU because patients are too ill to advocate for themselves. [9] For all these reasons, high-quality FCC should be considered as a basic skill for ICU healthcare professionals.

For patient-centred or family-centred care models to be operationalised in the ICU, patients’ family members and surrogate decision-makers must become active partners in decision-making and care. [11]

Despite the importance of FCC and the involvement of family in the delivery of care, the implementation thereof has not been smooth because of tensions in communication that seem to be an inevitable occurrence in interactions between families and health professionals.

Limited understanding of the principles guiding FCC, as well as language and cultural challenges related to FCC, might influence its full implementation. [8,13] Within the paediatric ICU (PICU) environment, it has been suggested that FCC principles are more than simply ‘family- involvement in decision-making’, but should also incorporate how parents experience systems, the healthcare environment and facility design. [12]

The current edition of the SAJCC contains two articles that address some of the tensions related to the delivery of FCC in the contexts of emergency and paediatric critical care in South Africa (SA). The first article in this issue [14] emphasises that, in order for family members to adapt to a healthcare establishment (e.g. an emergency department), it is important that healthcare professionals adhere to relational and participatory family-centered practice behaviours. Relational behaviour is essential to build effective and authentic relationships with families, while participatory behaviours are action-orientated and aimed at assisting families in capacity building. The authors state that it is important to note what families actually need as opposed to what healthcare professionals assume they need. Healthcare professionals should therefore identify the preferences of each family, as this increases trust and indicates respect for the families. The importance of providing support to aid families and include them in the decision-making process was echoed by this study. Furthermore, healthcare professionals should engage in reflection on their own interactions with families in order to maximise patient -and family-centered care. It was also suggested that staff should be offered formal education regarding the needs of families, particularly in view of SA’s diverse cultural context. [14]

Findings from a previous study conducted amongst emergency departments in the Durban area [15] recommended that a family needs assessment should be included as part of every patient’s assessment. In addition, evaluation of hospital policies and procedures for congruency with FCC, especially in relation to family-witnessed resuscitation and invasive procedures, is needed to promote family participation in patient care. Bereavement programmes to support staff in dealing with bereavement issues would be beneficial. Further research is warranted to improve FCC in the SA critical and emergency care context. [15]

It is acknowledged by the authors of the second article in this edition [16] that paediatric illness remains a major and stressful event for thir children and their family. Knowledge of parental needs and their perceptions of care are therefore necessary to improve the quality of PICU care. [16] The study findings highlight that parents appreciate being informed about their child’s condition, treatment and procedures, and being given explanations on the care. Parent participation in the decision-making process is thus essential. Davidson [11] concurs in stating that for a FCC model to be operationalised in the ICU, patients’ family members and surrogate decision-makers must become active partners in decision-making and care. Furthermore, the study highlights that elements of language and communication barriers, cultural competence, architectural and facility design, and parent participation must be considered as future research areas. [16]

Guidelines for FCC in neonatal, paediatric, and adult ICUs have been developed, which provide a summary of best practices as identified by the existing evidence to shape internal hospital policies related to supporting families in the ICU. Communication, clinician and family training, family presence, involvement and engagement, provision of consultative resources and environmental and organisational processes are all elements to consider when building an optimal programme of family-centred care in the ICU. [17]

Portia Jordan

School of Clinical Care Sciences, Nelson Mandela University,

Port Elizabeth, South Africa

S Afr J Crit Care 2018;34(2):34-35. DOI:10.7196/SAJCC.2018.v34i2.369

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17. Davidson JE, Aslakson RA, Long AC, et al. Guidelines for family-centered care in the neonatal, pediatric, and adult ICU. Crit Care Med 2017;45(1):103-128.

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