Family coping with illness

Family involvement, however brief or limited it may appear throughout the course of illness until death, holds transformative potential in facilitating adaptation through the acceptance of irreversibility and the pursuit of comfort.

The family undergoes changes in its structure and functioning, adopting behavioral patterns to reorganize, compensate for deficiencies, and prevent familial disintegration.

Assessment and Coping

• Identify family members and their characteristics (age, role, personality, occupation, lifestyle)

• Beliefs, knowledge, and attitudes regarding illness, treatment, and death

• Identification, expression, and management of prevalent manifest and latent emotions (validate fear, sadness, anger, helplessness)

• Identification, expression, and management of prevalent manifest and latent thoughts (worries, confusion, uncertainty, disruption of personal projects)

• Guidelines for assertive verbal and non-verbal communication: avoid distractions, do not interrupt, offer companionship, recognize ambivalent alliances, avoid imposing personal belief systems, show empathy, refrain from guessing, assuming, or giving unsolicited advice, encourage dialogue, allow time alone when irritable, show interest through questions in response to any initiative

• Identification of leaders and individuals capable of caring for members vulnerable to emotional imbalance and decision-making

• Flexibility within the family to restructure functions and roles to maintain quality of life and autonomy as needs change

• Family dynamics (secondary gains, need to accompany and be accompanied)

• Level of active coping skills with problem-solving and passive coping by reducing unpleasant emotions

• Crisis triggered by physical and psychological deterioration and the awareness of approaching death

• Determinants of family capacity: prior family structure, response to disorganization caused by diagnosis and prognosis, life cycle stage, previous relationship with the patient and other members, history and experience of past losses, type of illness, financial resources, spiritual practices, support network, educational level, and adaptation in redistributing tasks equitably considering the needs of the patient and family

• Existence of a Conspiracy of Silence (Implicit or explicit agreement by the family to hide or alter diagnostic or prognostic information from the patient)

- Etiological factors: rooted in the desire to protect the patient from further suffering due to fear of emotional overwhelm; based on ingrained beliefs, power dynamics, or imagined harm stemming from personal fears or past experiences

- Intervention: explicit communication and validation of behaviors. Anticipate emotional cost resulting from secrecy: “Why don’t you want us to inform your relative?”, “If you were ill, would you want your family to lie and deny you time to prepare?”, “If your relative already knows everything, wouldn’t it be better for them to express their concerns with you?”

• Existence of Caregiving Breakdown (Inability of the family to meet the multiple demands and needs of the patient, potentially compromising care quality or leading to negative attitudes)

- Types: By timing (early, late, or episodic); by duration (accidental, temporary, or permanent); by affected area (emotional, health, social); by affected individuals (individual, team)

- Etiological factors: family structure or illness among members, insufficient support network, caregiver living outside the home, disagreement with treatment, perception of disruption or postponement of personal projects, fragile emotional bonds, prolonged illness or high dependency of the patient, perception of abandonment by the care team

- Intervention: legitimize fatigue and acknowledge one's own limitations, promote the ability to negotiate and tolerate differences within the network, reinforce positive elements, and promote the preservation of roles other than caregiver.

• Presence of the "child of Bilbao" syndrome: when an absent family member arrives, creates an atmosphere of false hope due to "guilt," believing they must obtain more treatments even if this increases the patient's suffering.

• Level of physical exhaustion, emotional instability, substance use and excesses, sleep disturbances, appetite disturbances, hypochondriacal symptoms, regressive behaviors, anxiety, depression, and poor concentration.

• Psycho education regarding psychological processes: desire to escape, ambivalence about wanting it all to end, psychosomatic symptoms, overprotection, compensation with material things, isolation, and transference of unresolved grief.