Empowering Family Members

Empowerment is defined as a bottom up and participatory process that engages the people concerned in reflection, inquiry and action. To family members this means that while exercising their duty as citizens they have to be treated as equal members of society. But families of the mentally ill are facing the following challenges:

  • Limited hospital beds especially in mainstream hospitals;
  • Limited residential places / nursing homes/ community services;
  • Day to day management of care;
  • They are made to solve problems the professionals fail to recognise;
  • They bear a financial burden;
  • Very often they do not know who to see as a point of reference;
  • The lacunas found within services and having to improvise;
  • Feeling of isolation and lack of support;
  • Staying physically and mentally healthy under the stress;
  • Fear of developing mental illness themselves;
  • Staying calm during crises – Crisis management;
  • Asking for help from extended family and friends;
  • Juggling their job, family, care and social life;
  • Facing stigma and discrimination;
  • Not reacting to insults and threats during a crisis;
  • Accessing dependable mental health services that are available, effective and reliable;
  • Availability of and accessibility to adequate mental health services.

Main Concerns regarding their relative

  • Fear of self harm or harming someone else;
  • Side-effects of medication;
  • Reluctance towards medication intake;
  • Stopping medication and relapse;
  • What happens when we are gone?
  • Loss of their job due to their caring role;
  • Accepting the limitations and constraints of mental illness on the relative with mental health problems;
  • Erratic contact with professionals or frequent change of professionals;
  • Lack of continuation of care.

What is being done to empower carers?

  • Carers all over Europe have formed organizations to combat stigma and discrimination
  • The formation of support groups
  • Organization of  Family to Family Educational Programs
  • Raise awareness regarding carers’ needs

More than 48 of these organizations coming from 28 countries have joined EUFAMI.

EUFAMI is the only European organization working for families of the mentally ill. Through EUFAMI we are:

  • Promoting best practice;
  • Helping to reduce discrepancies between eastern and western Europe;
  • Identifying bad practices;
  • Campaigning for positive change;
  • Seeking new research in the causes and treatment of Mental illness that affect our loved ones;
  • Campaigning against stigma;
  • Advocating and promoting partnership and collaboration with health professionals;
  • Identifying barriers and opportunities and deal with them accordingly;
  • Through its prospect programme, sensitising social and health professionals;
  • Suggesting new approaches;
  • Challenging professional concepts;
  • Improving communications.

Through its common module users, families and professionals come together to discuss and enrich each other.

Suggestions for stake holders

Professionals

  • Carers need to be acknowledged as a source of help and involved/consulted in the treatment process;
  • Improve communication between professional staff and family carers;
  • Designate a point of reference who is able to guide carers through various situations that may arise;
  • Be involved as partners in the care process;
  • Carers' needs, concerns and worries should also be identified;
  • Well informed about the illness and side effects of medication;
  • Carers should be spoken to in a language they can understand;
  • Family perspectives are included in research;
  • Every experience learnt from a carer is another person’s empowerment.

Employers

  • Carers need flexi-time to juggle work and caring for someone who is mentally ill;
  • Opportunity of reduced hours at work;
  • Time for a break;
  • Understood during a crisis;
  • Not discriminated because of their caring role.

Policy makers

  • Carers save social services and health services millions of Euros;
  • Services specifically for carers' needs;
  • Incentives in the form of better community services to encourage carers to keep their loved ones at home;
  • Policies and strategies developed to assure that quality medical care is available;
  • Set up help lines for emotional support;
  • Involve relatives in planning support services for carers;
  • Provide accessible and dependable mental health services;
  • Professionally provided with best practice that meets international standards;
  • Set up legal rights for carers;
  • Set up standards and guidelines for staff including the Human Rights Act;
  • All procedure should be backed by legislation;
  • Monitored for quality assurance.

Present situation

  • Relatives are more altruistic;
  • They are overcoming certain barriers as they are more informed and becoming more vociferous;
  • They are aware of their own personal needs;
  • They are communicating better with the rest of their family, with their ill relatives and with professionals;
  • They are calling for a greater equality of mental health legislation throughout Europe.

Future

  • The Mental Health Declaration for Europe and the Mental Health Action Plan for Europe identified that empowerment of people with mental health problems and family members who care for them is a key objective for the next decade;
  • Focus on a holistic methods which include the family;
  • Families are calling for a change in training methods for all professionals to include family perspectives in their curriculum and to shift from a medical or social model into a bio-psycho-social model.

Conclusion

  • “Don’t let the negativity given to you by the world disempower you. Instead give to yourself that which empowers you.” – Les Brown
  • An empowered person is able to change challenges into opportunities.
  • Stigma may be overcome by family members voicing their concerns, suggestions and needs.
  • Empowerment restores hope, courage and resilience.
  • By sharing their experiences, carers’ empower each other as they become more informed about the disease/condition.