A PATIENT ENLIGHTENMENT WORKSHOP for both systemic lupus erythematosus (SLE) and Rheumatoid Arthritis (RA) patients was held last 29 November 2009 at the UST College of Accountancy Multi-purpose Hall. The workshop was based on the principle of “ILLNESS TRAJECTORY MODEL”, in consonance with the belief that the patient’s improved well-being and quality of life will depend on the intervention (medical or psychological) provided. It also aims to enlighten both patient and caregiver on the deeper understanding of their illness, providing them an opportunity to be in control of their illness.

Dr. Marthony Basco, a pediatrician who has been involved in group dynamics and training program sessions, designed the mechanics, questionnaires and procedures used in the activity, and provided overall supervision.


The Lupus workshop was held in the morning participated by 60 patients and caregivers. The afternoon slot was for chronic rheumatoid arthritis attended by 46 patients and caregivers.

(l-r) Patients-at-Work: Maribel Escriber, Lenina  Tujuan and Robelle Tanangunan at Registration	(l-r) The Organizers: Frances Tadeo, Romelie Dannug, and Dr. Cecille Marcelo

Both workshops revolved around 4 aspects of a patient’s life affected by their chronic illness, namely:
1.    Physical Aspect
2.    Psycho-emotional Aspect
3.    Social Aspect
4.    Spiritual Aspect

PHYSICAL ASPECT:

It aims to identify the changes that they experienced in terms of their functionality or mobility and the coping patterns in relation to these changes. A questionnaire was provided that contained issues on differences in activities before and after diagnosis and was mainly centered on SELF, HOME, WORK and COMMUNITY.  Also, it provided insights on self strategies employed on dealing with the daily life situations of both the patient and caregiver.

Facilitators:
Volunteer Patients:
  For Lupus: Cecille Luna & Manuel Roxas
  For Arthritis: Daisy Cabugao & Sylvia Reyes
Students: Mar Christopher Epetia & Kathyrn Jimenez

Outcome:
Lupus and Rheumatoid Arthritis patients often complain of widespread aches and pains associated with limited mobility, easy fatigability on slight physical exertion coupled with no/limited outdoor activities due to avoidance of sun exposure.
Proposed strategies are geared towards making their daily tasks easier such as knowing their capabilities and limitations, seeking help if the task is beyond their capacity, to take a rest if they feel the wear and tear, and muscle strengthening exercises.

PSYCHO-EMOTIONAL ASPECT:

It aims to know the emotional or psychological state of the patient/caregiver by asking common questions such as: Kamusta ka (How are you); Ano ang nagbago sa iyo (What are the changes that happen to you); Paano na yan (What comes next); May maitutulong ba ako sa iyo (How can I help you). The questionnaire also contained the expected answers and will also try to assess if their answers would stay the same after a thorough reflections on the proposed questions.

Facilitators:
Volunteer Patients:
  For Lupus: Guia Buan & Abcede Buan
  For Arthritis: Elyn Centeno & Robelle Mae Tanangunan
Students: Michael Jeff Fontano & Christine Guillermo

Outcome:
The patients and caregivers were able to maintain a positive outlook inspite of their illness and majority maintained their initial answers even after given a time to reflect on their questions.  They were able to accept their condition with the support of their doctors and family though their feelings are sometimes dictated by their physical capabilities and limitations.

SOCIAL ASPECT:

This aspect looks into the changes in patients and caregivers’ interpersonal relationships and further examines which of these are founded on TRUST. The questionnaire has two parts: the first portion inquired on the persons they have put their trust on and the qualities that they posses; and the second part dealt on the qualities that participants need to be improved to make them worthy of the trust to others. This interactive session was lively highlighted by asking the participants to stand up and say out loud to the group his/her name, and the quality he/she possesses that makes him/her worthy of their trust.

Facilitators:
Volunteer Patients:
  For Lupus: Pamela Hernandez & Carmelita Luna
  For Arthritis: Ramon Ypil & Cathy Zulueta
Students: Ma. Corazon Iniego & Maureen Laranang

Outcome:
Inspiring trust on others created a wonderful feeling of self-worth. The essential qualities identified are: patience, understanding, helpfulness, positivity, and kindness. 

SPIRITUAL ASPECT:

This aims to look into the beliefs or spiritual outlook that have been transformed/converted brought about by the illness regardless of the patient’s religious affiliations. The questionnaire involves the 3 areas of spirituality most common among Filipinos: Faith (Pananampalataya); Hope (Pag-asa); Trust (Tiwala).
This area also asks what/who the sources of these 3 areas are and what things they did/can do to increase their spirituality.

Facilitators:
Volunteer Patients:
  For Lupus: Patricia Astronomo & Sabina Sanchez
  For Arthritis: Zenaida Estrada & Sonia Tanate
Students: Raquel Isabelle de Guzman

Outcome:
Faith, Hope and Trust are rooted from God, family members, friends and doctors. They are the source of strength of the patients and caregivers, who make the situation bearable. Continuous prayer to God, spending quality time with other family members, attending support group meetings, and following the doctors’ advices unceasingly were the ways discussed which led to stronger spirituality of the participants.

At the end of the workshop, the group was visited by rheumatologists who were part of the powerhouse faculty of speakers for Ten Topics in Rheumatology – Asia 2009. Prof. Graham Hughes visited the Lupus workshop, while Drs. Christopher Edwards, Chak S. Lau, and Keith Lim took time to see the Arthritis workshop.

Prof. Graham Hughes and Prof. Sandra Navarra while listening to the summary reports of the facilitators	(l-r) Dr. Keith Lim, Dr. Chak S. Lau, Prof. Sandra V. Navarra, Dr. Christopher Edwards, Dr. Lyndon Llamado, and Dr. Marthony Basco

It is noteworthy that the patient facilitators consisted of specially motivated patients with either lupus or RA who ably led the discussions regardless of whether the group consisted of their same illness or not – providing the opportunity to have an extra glimpse of the “struggles and tribulations” of people who had a similar – but not the same – chronic illness as they have. The Workshop culminated with a showcase of  talents (students and patients together), adding an upbeat and festive atmosphere to the session. 

The success of the workshop was made possible by the support, dedication and hard work of the staff of the Lupus Inspired Advocacy (LUISA) and Arthritis projects of the Rheumatology Educational Trust Foundation, Inc., the patient facilitators, medical student volunteers, with the active participation of  patients and caregivers.