Effects of Illness on Patients and Relatives: Illness Behaviour…

Effects of Illness on Patients and Relatives: Illness Behaviour and Family Impact

Illness is the person's response to disease or injury—the change they experience in physical, emotional, intellectual, social, developmental or spiritual functioning. Illness behaviour is how a person notices, describes, interprets and responds to symptoms, seeks help, accepts care and returns to daily life. Physiotherapy students must understand both the patient's experience and the effect of illness on relatives, caregivers and family roles.

Why this topic matters in physiotherapy

Two people with the same diagnosis may seek help at different times, describe pain differently and choose different treatments.
Illness may change mobility, self-concept, work, parenting, sexuality, finances, social participation and family responsibilities.
Relatives may become caregivers, decision-makers, advocates or sources of pressure; their stress affects the patient's rehabilitation environment.
Understanding illness behaviour reduces blame and helps the therapist design a safe, realistic, person-centred plan.

Learning outcomes

define illness, disease, illness behaviour and the sick role;
explain determinants and stages of illness behaviour;
describe physical, emotional, behavioural, lifestyle and self-concept changes in patients;
describe role change, stress, financial effects, loneliness and social changes in families;
apply patient- and family-centred communication during physiotherapy;
identify factors that influence help-seeking, dependence and recovery;
support safe rehabilitation while respecting autonomy and cultural beliefs; and
recognise caregiver strain, severe distress and situations requiring referral.

1. Illness, disease and health

Concept	Meaning	Example
Disease	A pathological or physiological process identified through clinical assessment, tests or professional knowledge.	Stroke, fracture, osteoarthritis or infection.
Illness	The subjective experience and functional effect of disease or injury on a person's body, mind, relationships and roles.	Fear of falling, inability to work, loss of confidence or pain after a fracture.
Illness behaviour	How a person notices, monitors, labels, interprets and acts on symptoms, including use of healthcare.	Resting at home, visiting a pharmacy, seeking traditional care or attending physiotherapy.
Sick role	A social position with expectations, rights and responsibilities related to being ill and receiving care.	Temporarily excused from work, expected to seek appropriate care and participate in recovery when able.
Recovery and rehabilitation	Resuming function, roles and self-management, or adapting to a new baseline when full recovery is not possible.	Returning to school with an aid or learning safe independence after stroke.

2. Determinants of illness behaviour

Recognisability: visible swelling, paralysis or a rash may prompt faster care than gradual weakness or fatigue.
Perceived seriousness: people act according to what they think the symptom means, not only its medical severity.
Knowledge and cultural assumptions: beliefs about ageing, work, childbirth, spiritual causes, traditional treatment and stigma shape interpretation.
Disruption: a symptom that prevents work, walking, childcare or sleep is more likely to trigger action.
Frequency and duration: repeated or persistent symptoms may eventually exceed a person's tolerance.
Tolerance and coping: some people minimise pain, while others seek help early; neither pattern alone proves exaggeration.
Access: distance, transport, cost, privacy, language, disability access and trust determine whether help can be reached.
Previous experience: past benefit or harm from services influences future choices.
Family and peer influence: relatives may encourage, delay, finance or control care.

3. Stages of illness behaviour

The stages below are a teaching model associated with Suchman. People may move forward, pause, repeat or skip stages, particularly during chronic or fluctuating illness.

Stage	Typical experience	Physiotherapy opportunity
1. Symptom experience	Awareness of pain, weakness, a lump, rash, fatigue, reduced function or another bodily change.	Listen to the patient's description, baseline and functional impact; identify urgent warning signs.
2. Assumption of the sick role	The person accepts that something is wrong, tries self-care, seeks reassurance or makes excuses for changed activity.	Explore beliefs, previous advice and self-treatment without judgement; provide clear education.
3. Medical-care contact	The person seeks professional advice, receives a diagnosis, accepts or questions it and decides whether to follow the plan.	Explain examination, consent, options, expected progress, precautions and referral.
4. Dependent-patient role	The person relies on professionals or relatives and may feel relief, fear, passivity or loss of control.	Provide safe assistance while teaching participation, self-management and graded independence.
5. Recovery and rehabilitation	The person relinquishes unnecessary dependence, resumes roles or adapts to a new level of function.	Set meaningful goals, prevent complications, support return to family/work and plan follow-up.

4. Effects on the patient

Physical and functional effects

Pain, weakness, altered sensation, breathlessness, fatigue, sleep disruption and reduced endurance.
Loss of mobility, balance, continence, communication, self-care or ability to work and study.
Deconditioning, stiffness, contracture, pressure injury, falls and dependence when activity is unnecessarily restricted.
Changes in appetite, medication use, body image, sexual function and comfort.

Emotional and behavioural effects

Shock, disbelief, anxiety, fear, anger, frustration, guilt, shame, sadness, hopelessness or relief.
Withdrawal, irritability, denial, risk-taking, over-reliance on care or refusal of treatment.
Reduced motivation, difficulty concentrating, forgetfulness and changes in communication.
Loss of self-esteem, self-concept, independence and confidence in the body.

Lifestyle and role effects

Changed diet, activity, rest, sleep, work, school, recreation, intimacy and social participation.
Disrupted parenting, household, community, spiritual or leadership roles.
Financial stress from treatment, transport, lost income, equipment and caregiving.

5. Effects on relatives and family

Family impact	What it may look like	How the team can help
Role changes	A spouse, parent or child becomes a caregiver; the patient loses a former family responsibility.	Discuss safe roles, preserve autonomy and share tasks.
Increased workload	Lifting, transport, appointments, personal care, cooking and supervision add to daily demands.	Teach safe handling, simplify the programme and assess caregiver capacity.
Stress and uncertainty	Fear of deterioration, unclear prognosis, conflict about decisions or worry about the future.	Communicate consistently, clarify what is known and provide referral or counselling.
Financial problems	Treatment costs, transport, equipment, lost income or job insecurity.	Ask about cost, coordinate social resources and choose affordable interventions.
Loneliness and isolation	Reduced social visits, stigma, exhaustion or inability to attend community events.	Support accessible participation, peer connection and community follow-up.
Change in customs and relationships	Altered celebrations, meals, intimacy, faith practice or family routines.	Ask what matters and adapt care respectfully.

6. Hospitalisation and the dependent role

Admission removes people from familiar routines and may expose them to pain, noise, procedures, privacy loss, sleep disruption and unfamiliar authority. A previously independent adult may suddenly depend on staff for toileting, transfers, bathing and decisions. Dependence can be necessary for safety but should not be made permanent by doing everything for the patient.

Orient the patient to the environment, routine, call system, equipment and therapy plan.
Ask permission before touch and explain why a movement or position is needed.
Maintain privacy, dignity, clothing, cultural practices and communication access.
Use the least assistance necessary and encourage active participation in every safe step.
Involve relatives with consent and teach them safe assistance rather than unsafe lifting.
Prepare for discharge early: home environment, transport, equipment, caregiver capacity, warning signs and follow-up.

7. Patient- and family-centred physiotherapy management

Assess the person, not only the disease: include function, roles, mood, beliefs, communication, family, access and goals.
Validate the experience: acknowledge that illness can be frightening, tiring, embarrassing or financially difficult.
Explain and negotiate: use plain language, check understanding and agree on priorities.
Set functional goals: connect treatment to dressing, walking, work, school, caregiving, worship or social participation.
Build independence safely: practise active movement, transfers, equipment use and self-monitoring.
Support caregivers: teach handling, pacing, skin care, positioning, communication and when to seek help.
Coordinate and refer: use the multidisciplinary team, community resources and mental-health or social support pathways.
Review change: reassess symptoms, function, emotional state and family capacity at every meaningful transition.

8. Communication strategies

Situation	Helpful approach	Avoid
Patient denies the problem	Ask what they understand, provide information gradually and allow time.	Arguing, ridiculing or forcing “acceptance.”
Patient is angry	Stay calm, listen for the need, set safe boundaries and offer a practical next step.	Taking anger personally or promising what cannot be delivered.
Family speaks for an adult	Address the patient first, check consent and include family appropriately.	Ignoring the patient or assuming relatives have automatic authority.
Low literacy or language difference	Use interpreter support, pictures, demonstration and teach-back.	Using a child as interpreter or assuming a nod means understanding.
Distress or hopelessness	Listen, ask about safety, inform the supervisor and refer.	Offering false reassurance or leaving immediate risk unsupported.

9. Supporting recovery and rehabilitation

Explain that recovery may be rapid after some acute illnesses but gradual, fluctuating or incomplete in chronic illness.
Set short-term and long-term goals; celebrate function and participation, not only normal test values.
Plan for setbacks, flare-ups, fatigue, transport and caregiver availability.
Use activity pacing and graded exposure to rebuild confidence without overloading the patient.
Address environmental barriers, equipment, home safety and return to work or school.
Help the person relinquish unnecessary dependence while respecting the need for assistance.
Continue education after discharge through written/pictorial plans, community follow-up and clear referral.

10. Practical scenarios

Scenario 1: Assuming the sick role

A man with knee pain stopped all activity after being told that movement would “wear out” the joint. He now depends on his wife for dressing and avoids work. The physiotherapist explores the belief, screens for red flags, explains graded loading, sets a goal of dressing independently and teaches the wife to support rather than complete the task.

Analysis: illness behaviour was shaped by information, fear and family protection. Education and graded independence can change the pathway.

Scenario 2: Family role strain

A daughter brings her father after stroke but appears angry and says he refuses to practise. Assessment reveals she works at night, lifts him alone and cannot pay for transport. The therapist teaches a safer transfer, reduces the home programme to key tasks, explores community options and refers for social support.

Analysis: the “non-compliance” story concealed caregiver overload and access barriers.

Scenario 3: Hospital dependence

An independent older patient remains in bed because staff always bring the commode and transfer him. The student explains the goal, checks safety, practises using the call bell and walking aid, and agrees that staff will supervise rather than lift when possible.

Analysis: necessary care has become learned dependence. Graded participation restores confidence and function.

11. Examination points and revision questions

Illness is subjective and includes changes in physical, emotional, intellectual, social, developmental and spiritual functioning.
Illness behaviour includes describing, monitoring, interpreting symptoms, taking action and using healthcare.
Suchman's stages are symptom experience, assumption of sick role, medical contact, dependent-patient role and recovery/rehabilitation.
Illness can change self-concept, lifestyle, emotions, family roles, finances, social life and work.
Family assessment includes role change, task load, stress, loneliness, finances and cultural routines.
Support dependence only as long as needed for safety; promote active participation and autonomy.

Differentiate disease, illness, illness behaviour and the sick role.
Explain five determinants of illness behaviour.
Describe the five stages of illness behaviour and relate each to physiotherapy.
Discuss six effects of illness on a patient and six effects on relatives.
How can a physiotherapist reduce harmful dependence during hospitalisation?
Design a family-centred plan for a patient recovering from stroke.
What questions would identify financial, cultural and access barriers?
Why should illness behaviour never be equated automatically with malingering or laziness?

References and further reading

Study note: This page supports supervised learning. Follow current Ugandan law, institutional policy, safeguarding procedures and the direction of the supervising physiotherapist for patient and family care.