| Literature DB >> 30263163 |
Abstract
How often do we find ourselves concentrating so much on treating a patient with schizophrenia that we forget about the needs and difficulties of the family members who take care of that patient? This article highlights the global and specific difficulties that families and caregivers experience in having to care for chronically ill family members with schizophrenia with a backdrop of continuing global deinstitutionalisation of such patients. Matters such as burden and expressed emotion are explored, family-specific interventions are discussed and areas of service delivery and resource inadequacies are identified.Entities:
Year: 2016 PMID: 30263163 PMCID: PMC6138106 DOI: 10.4102/sajpsychiatry.v22i1.922
Source DB: PubMed Journal: S Afr J Psychiatr ISSN: 1608-9685 Impact factor: 1.550
Examples of objective and subjective burden as experienced, and described, by family members or caregivers.
| Burdens | Description by family members and caregivers |
|---|---|
| Objective Burdens |
Neglect of other family members and disruption of family life, [ Disruption and constraints in daily social,[ Social isolation and lack of social support.[ Withdrawal of support by/loss of contact with friends, family and neighbours.[ Loss of employment/income or reduced productivity/increased absenteeism.[ Increased medical expenses and financial problems.[ Increased workload and taking over of tasks like shopping, repairs, clothes washing and minor chores.[ Changes to household routines.[ Neglect of hobbies.[ Difficulties in going on holidays/Sunday outings.[ Difficulties in inviting people to one’s home.[ Supervisory obligations and having to accompany the patient outside the home.[ Having a chaotic lifestyle and poor quality of life.[ Need for care services.[ Experiencing stigma related to the illness.[ |
| Subjective burdens |
Guilt and self-blame,[ Apathy and denial of illness.[ Feelings of loss (of the potential of the family member).[ Worry - mostly about the patient’s future.[ Fear (of violence especially).[ Tension,[ Dejection, grief,[ Emotional costs/wellbeing,[ Physical problems.[ Feelings of resignation,[ Helplessness and hopelessness.[ Aloneness and emptiness.[ Embarrassment in social situations,[ Feelings of having no influence on the illness despite self-sacrificing care.[ Feelings of being incapable of caring adequately for the patient.[ Exhaustion from increased energy expended on dealing with problematic patient behaviour, psychotic symptoms, poor self-care, reclusiveness, poor medication adherence and confusion.[ Lack of sleep created by excessive noise from the patient.[ Emotional effort expended in encouraging patient activity and medication adherence.[ Low self-esteem and feelings of inferiority.[ ‘at wit’s end’, ‘feeling marginalized’ and ‘lacking support’.[ |
Factors influencing burden.
| Burdens | Factors |
|---|---|
| Increased Burdens |
Severely ill/disabled patient.[ Unemployment/low level of patient psychosocial functioning of.[ Patient presenting with severe negative symptoms and poor self-care.[ Acutely psychotic patient,[ Patient with concomitant symptoms like obsessions and phobias.[ Patient hostility,[ Patient suicidal ideation/self-harm.[ Patient sleep-wake cycle disturbance.[ Initial onset and early stages of patient illness.[ Patient symptom relapse/deterioration.[ Patient hospitalization.[ Frequent hospital visits.[ Poor patient medication adherence.[ Young/old or male patient.[ Low level of patient and caregiver education.[ Female and/or unmarried caregiver.[ Young/old caregiver age.[ Parents/close relatives as caregivers.[ Passive caregiver coping skills (eg. avoid-ance/denial).[ Poor caregiver quality of life.[ Large number of hours spent caring for the patient (> 7hours daily – ‘role overload’).[ Limited friend/family care involvement.[ Non-nuclear family/negative family atmosphere with frequent arguments (decreased sense of coherence).[ Poor family resources,[ Family home far from hospital/in an urban setting.[ Experiencing illness-related stigma.[ |
| Decreases burden |
Improved patient condition.[ Long periods of remission.[ Good relationship with patient/mutuality.[ Patient participation in a rehabilitation programme.[ Family participation in a psycho-education programme, group therapy/in a self-help group.[ Home visits by nurses as part of an individualized care plan.[ High social support.[ Professional network support.[ Caregiver optimism.[ High active caregiver coping mechanisms.[ Caregiver religious coping strategies.[ Male caregiver.[ Sibling/close relative/friend as caregiver.[ Caregiver problem-solving skills.[ |
Common complaints by families and caregivers about resources, service delivery and mental health care professionals.
| Common Complaints | Comments |
|---|---|
| Complaints about resources and service delivery |
That there is a:
general poor level of mental health care;[ lack of support from social psychiatric services;[ lack of help centres, crisis support facilities and self-help groups (most of which are privately funded by committed relatives);[ refusal of health insurance to cover therapeutic sessions;[ lack of support from the State and from health insurance regarding financial burden;[ problem surrounding laws, legislation, regulations, politics and bureaucracy within mental health care;[ lack of co-ordination and allocation of responsibility within mental health care.[ |
| Complaints about mental health care professionals |
Professionals:
show a lack of interest in the patient, as well as the family and their fears, problems and worries;[ seem uncaring and disrespecting;[ are believed to regard family members as a burden and a source of irritation;[ are experienced as being arrogant;[ are believed to exclude family members from the treatment pro-cess;[ use technical language, seemingly as a means of excluding rela-tives;[ offer no hope and don’t validate family member concerns/give simple explanations;[ disregard family members’ knowledge of the patient through failure to consult with them/seek their opinion;[ make it difficult for family members to get relevant information from them;[ withhold diagnoses;[ are seen to discriminate against families, who believe that their family member with a mental health problem does not receive the same level of care as patients with physical problems.[ There is a lack of:
support from professionals,[ engagement from staff.[ |