FCM 1: The Impact of Illness to the FamilyDra. Moderes

CARPE DIEM

Why Study Impact of Illness?

• Sickness of patient causes suffering and severe dysfunction for the patient’s family

• Particular illness sets in motion processes that are disruptive of family life and hazardous to the health of family members

– Role reversal• because one member of the family cannot

fulfill his/her tasks anymore, there must be someone who will do his/her role for the patient (i.e., mother now becomes the breadwinner)

– Income loss• Because of medicines, treatment, etc.• “Bawal magkasakit”; “Mahal magkasakit”

– Disruption of activities– Danger of transmission

• because of close contact between the patient and the family members

• Patient’s disease is embedded in a whole matrix of difficult family problems that contribute to the disease process itself.

– Poverty, – Unemployment, – Other sickness in the family– Chronic family dispute

• Emotional burdens, stresses, etc.– Poor nutritional habit

• Are the family members eating a balanced diet?

– Inadequate housing condition• Key factor influencing sleep quality, indoor

air, home safety, accessibility, mould growth, perception of crime, and residential quality.

• The interaction that takes place between the health care system and the patient & his family are dependent on:

– setting of care– type of cure; – ability to pay; and – flexibility/responsiveness of the health care system

• Impact of illness minimized by personalized care that is highly responsive & flexible to the patient and the family members

• Illness, which is chronic and complicated, results in structural change within family system to the point that leads to different roles and functions

Studies have shown that:• There are psychological & social effects on the family of a patient

with chronic or life threatening illness;• There are effects on parents & sibling of the illness of a child;• Severe illness in parents place children of family at greater risk.

DISEASE vs. ILLNESS

• The two represent one phenomenon but 2 aspects of sickness

DISEASE ILLNESS

• Primary biologic & psycho-physiologic disorder

• Includes the sufferer’s experience of the disease & the broad range of dislocations felt by both the sufferer and his family

• Deeply embedded in the social, cultural & family context & context of the person who is ill

Discovering the Meaning of Illness for the Family

INVESTIGATE DISEASE INVESTIGATE ILLNESS

• Examining clinical and laboratory evidences of biologic and psycho-physiologic dysfunction

• Exploring the meaning of illness to the patient and the patient’s family

Impact of the Family on Chronic Illness

• Asthma, renal failure, heart disease, cancer, diabetes• A significant correlation between the family and disease outcome

– Ex. An emotionally distant of disengaged family in which there is inadequate supervision and parental support may result in noncompliance with insulin and diet and, hence in poor diabetic control

• Clear family organization– good diabetic control

• Dysfunctional psychosocial factors – (such as absent fathers, poor living conditions, chronic

family conflict, inadequate parental functioniong, and the lack family involvement)

– Increase the likelihood of poorly controlled diabetes• Low family cohesion and high conflict

– Poor diabetic control• Parental indifference

– Poor diabetic control and in the diabetic child

Major Illnesses Involving Loss of…

• Body parts• Ability to carry out normal and treasured activities• Sense of self-esteem• Dreams and plans for the future• Sense of invulnerability of one’s self and in love ones that keeps

existential fears of impending death and separation at bay

The Family Illness Trajectory – Passage thru Sufferings

• Normal course of the psychosocial aspects of disease for the patient and the family

• Knowledge of trajectory allows the physician to predict, anticipate and deal with a family’s response to illness

• Indicates normal and pathologic response thus enabling family physicians to formulate special therapeutic plan

Stage in Family Illness Trajectory

Stage I Onset of illness to diagnosis

Stage II Impact PhaseReaction to diagnosis

Stage III Major therapeutic effortsStage IV Recovery Phase Early Adjustment to outcome

Stage V Adjustment to the Permanency of the outcome

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CARPE DIEM

FAMILY AND COMMUNITY MEDICINE I | The Impact of Illness to the Family

TYPES OF ONSET OF ILLNESS AND ITS EFFECTS ON FAMILYNature of Illness Nature of Onset Characteristic of Experience Impact on Family Case

Acute, rapid illness/ accident Rapid, clear onset Provide little time for physical and psychological adjustment.

Short period between onset, diagnosis & management.

Caught up in suddenness.

Deal with immediate decision.

Often with little support from within and outside the family.

Roberto, 32, father of three small children, applied as a seaman one year ago. After six months of being away with his family, he died of fatal arrhythmia, while aboard the ship.

Chronic, especially debilitating Gradual onset Suffer from state of uncertainty over meaning and symptom.

Vague apprehension & anxiety

Fearful fantasies over denial of seriousness of symptoms and possible implications.

Nilo, 26, father of 2, sole provider, worked as a messenger for 2 years. He encountered a motorcycle accident 1 year ago which left half of his body, from the waist down, paralyzed. His wife accepts laundry work from neighbors in order to feed their family and take care of Nilo’s needs and medications

STAGE I – Onset of Illness

• The stage experience prior to contact with medical care providers– ex: malaise– Nature of onset play an important role on impact of

illness on a family and some meaning of experiences are formulated here.

• Onset – Acute/gradual– Family adaptation in acute illness requires:

• Ability to tolerate highly charged situations, rapid mobilization of family resources, flexible role, problem solve efficiently, abut to together made of use of outside resources

* see table above for the nature of illness, and the effects of its onset

As a physician…1. Explore the fear that the patients/ family bring up in the clinic.2. With inappropriate label of illness, acknowledge and explore

conflicts the patient and family may be experiencing.3. Explore aspects of pre-diagnostic phase of patients and families.

STAGE II– Reaction to Diagnosis: IMPACT PHASE

• Information on the diagnosis is given in a way the patient can absorb, given this level of anxiety or shock

• Disease and appropriate treatment are described according the patient’s level of understanding and comprehension

2 Planes or Areas by which Family and Patient React and Adjust:

• EMOTIONAL PLANE– Onset of Illness: denial, disbelief & anxiety

• Protest diffuse directly over unfairness (minutes to hours)

– Emotional upheaval: strong emotions • Depends on disrupted roles and channels

(period of weeks)

– Accommodation: accommodate and accept diagnosis• Very important for the implementation of

therapeutic plans

• COGNITIVE PLANE– Phase I: tension & confusion w/ probable lack of

capacity for problem solving• threat sets in motion tension reduction

mechanism

– Phase II: repeated failure in deriving the diagnosis may lead to exacerbation of tension & increase distress

• resort to prayers; still earns capacity to problem solving

Case:

Mae, 21, with an 18 month old child, was diagnosed with lymphoma 6 months ago. Due to lack of funds, her mother, who is also the caregiver, has tried several faith healers and other therapeutic modalities to comfort Mae’s symptoms.

When asked about Mae’s family history of cancer, her mother said that her husband, Mae’s father, died of liver CA in the hospital where Mae was diagnosed with Lymphoma. She expressed her fears regarding the management and the appropriateness of care in the hospital.

Mae continued to have anorexia and vomiting, back pain, cough, and difficulty of breathing.

Also, she has been depressed for the last three months because asidefrom her illness, her husband was rumored to be having another girl, limiting his time in caring for Mae.

Emotional Plane where the patient is now

Anxiety and Depression

Phase in the cognitive plane where the patient is now.

Phase 2 to 3Failure to derive the diagnosisTrial of different approaches to relieve stress.

As a physician…1. Anticipate problems and help family cope and adapt through

family meetings/ discussion.2. Make clear about the nature of illness by helping the family

maintain openness that allows sharing and support.3. Know that the feeling of guilt is a natural response to stress of

grief and loss, anticipate such feelings, and make realistic goals to correct the feeling.

4. Help the family assess the likely effect of the illness on the family.5. Assess the capability of the family to cope with stress.6. Offer alternative interpretation of proposed therapeutics.7. Describe disease and treatment according to patient’s level of

comprehension and understanding.

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CARPE DIEM

FAMILY AND COMMUNITY MEDICINE I | The Impact of Illness to the Family

STAGE III: Major Therapeutic Efforts

• Have multiple variables, works in harmony with the wishes of the patient and family

• Critical issues:– Psychological state and preparedness of the patient &

family determine the choice of therapeutic plans as well as the alternative choices

– Assumption of responsibility for are very early in the treatment plan

– Economy of therapeutic plan• Economic Impact of Illness: emotional

trauma, social dislocation, & economic catastrophe

– Life style & cultural characteristics of family– Emotionally stressful effects of hospitalization, surgery

and other major therapeutic method for the patient’s family

• Father - special economic burden• Mother - poses high risk of family

dysfunction• Children - special syndrome of emotional

problems• Parents - helpless, guilt, frustrated or hurt• Geriatric - fear, loneliness, helplessness

Case:

56/M married with three children, came in due to cough for 1 month.CXR: Cavitary lesion at right apexDiagnosis: Pulmonary TuberculosisTx: 2 months HRZE, 4 months HR.

HOW WILL YOU TELL THIS PATIENT THAT HE HAS PTB AND CONVINCE HIM TO TAKE HIS MEDICATIONS?

As a physician…1. It is the right of the patient to know about their disease.2. Remain open and work in harmony with the patient and his

family.3. Deal with multiple variables; consider all factors when planning.4. Coordinate all aspects of therapy.5. Anticipate pathologic responses and be able to deal with them.

STAGE IV: Early Adjustment to Outcomes – Recovery

• Initiates a period of gradual movement from the role of being sick to some form of recovery or adaptation with corresponding adjustments

• Illness outcome is an important phase for patients and family • Type of outcome:

• Return to full health• gains from illness experience• nurture & allowed to take over the

abandoned obligation

• Partial Recovery• followed by a period of waiting to learn if

disease will return or fear of death because of long period of waiting

• Permanent disability• requires acceptance of condition

As a physician…1. Deal with immediate effects of trauma.2. Alleviate anxiety and assure adequate rest.3. Psychological support.4. Explore level of understanding of patient and family.

STAGE V: Adjustment to the Permanency of the Outcome

• Family adjustment to crisis• Acceptance & adjustment to permanent disability -> second crisis• Coping mechanism developed during the earlier stage of family

adjustment:– Person who is sick continued to be treated as sick & he

is treated as patient and not integrated in the family– Treat patient as recovered, full, responsible person

• For Acute Illness– potential for crisis especially when family routines are

suspended– Physician can facilitate acceptance for diagnosis.

• For Chronic Illness– higher incidence of illness in other members of the

family due to prolonged fear and anxiety– Physician should encourage ventilation of feelings, give

reassurance, and reinforcement of care.

• For Terminal Illness– highly emotional & potentially devastating– Functional: members will be drawn together– Dysfunctional: seed for future family discord &

breakdown– Physician should provide quality home care

• Family reaction to death– Already accomplished - reaction after prolonged illness

and adaptation– Stage of Denial - few days to weeks– If prolonged - premorbid pattern of behavior (anger,

depression, bargaining acceptance)

Family in Crisis

• When family moves into a state of dis-equilibrium in response to any situation or event that it cannot resolve by use of available problem-solving skills, behavior or resource;

• When illness is perceived as threat to its equilibrium

PHOTO MEMORIES…

Page | 32 Sept 2010

CARPE DIEM

FAMILY AND COMMUNITY MEDICINE I | The Impact of Illness to the FamilyAng nagpagulo sa atin noong September 1 and 2, 2010… Masayang “–ber” months starter to!

Page | 42 Sept 2010