Caregiver felt alone and not understood (9/10)

Mas Agus and Cousin (Caregiver and ODS) (9/10)

Mas Agus has a Cousin diagnosed with schizophrenia

First time when he knew that his Cousin got diagnosed

- he felt alone

- no one understand 

- inferior - didn't want to invite friends back home

- "why ODS in my home?" - questions why does it have to happen in his home?

- over time, he said his family comes to realise that he is STILL family

- even though he is different from "orang Biasa"

How do others react?

- "takut"

- "Sakit"

Caregiver's Journey: Relapses are common, Managing Reactions of neighbours (9/10)

Pak Harry and Son (Caregiver and ODS) (9/10)

Pak Yustinus Harry Nugroho and his Son who was diagnosed with schizophrenia

He started his sharing by showcasing the behaviour of his son, smoking non-stop, looking aimlessly and talking to self.

Reactions to diagnosis

When he was diagnosed, he will keep asking "why can't I go university?" He will punch himself.

#Evidence of self-blame via self-punishment.

During a relapse: 

He talked to himself.

Prayed to "nobody"

Chain-smoked

His eyes were empty.

He will walk on his own - "kosong"

#Relapses are common.

How he felt

I felt really sad (sedih sekali)

Why must it be my Son?

How he react?

@Neighbours

- not defensive

- patient, explain to them, help them understand

(I received encouragement from the Neighbours in my Neighbourhood, many well wishes that he can become better)

Harus optimise. Harus positive!

What helped Pak Harry

Attended a training for caregiver by RSJ Grahsia 

- he received social support

- realised that he is not alone

- became convinced that there is hope for recovery for ODS

He now runs the support group independently.

He wished for:

- more community support

- more understanding and empathy towards PMI

Recorded post-seminar on "Undersranding Schizophrenia" Organised by Lembaga Mahasiswa Psikologi on 9 October 2015

Operationalising the construct of Perceptions

Perceptions: Association, Attribution, Reactions

My Questions to Mental Health Professionals:

Attribution: why? - what's the cause?

Treatment: how?

Reaction: 

- mental health landscape (what's good / what's lacking?)

- spiritual treatment (dukun / kiyai) - possibility of partnership?

- stigma?

- Javanese cultural factors that act as protective factors?

- patients reaction to diagnosis?

- caregivers?

- community's reaction?

Association:

First word? 

Associations: Words Used to describe persons with mental illness(es)

Technique to operationalise "Perceptions"

* Association 

* Attribution (meaning)

* Reactions

What people in masyarkat say about PMI  (19/9)

- gila - anyone who enter must be crazy 

- Sinting - gila 

- kenthir - gila 

- gemblung - people who are very stupid

- stress - when one has too much, it affects one's ability to think straight

Results of survey

Kasihan (pity)! My research surfaced kasihan (pity) as the most common word associated with persons with mental illness(es) where more than 40 respondents out of 200 (20%) cited this as the first word that comes to mind when thinking of such persons.

Besides kasihan (pity) other words commonly associated (Chart 1) are gila (crazy) — 12.5% (25 respondents), sakit (sick) — 7.5% (15 respondents), edan (crazy), aneh (weird), kucel (crumpled), berbeda (different), kosong (empty), hilang (lost) and Islamic proclamations: astagfirullah (forgiveness from Allah), innalillahiwainailaihirojiun (surely we belong to Allah and to Him shall we return).  

RSJ Grahsia: Learning from experienced mental health professional Mbak Aspi (19/9)

RSJ Grahsia (observations on environment)

- tenang (peaceful) on Sat

- focus on rehabilitation

- located far from city centre (usually for rehabilitation houses)

- bureaucratic - requires letter from Heads to Heads - shows the importance RSJ Grahsia placed on patients' confidentiality

Interview with Mbak Apsi of KESWAMA revealed:

- menolong - PMI can be helped and more can be done to help them. I want to do what I can to help them.

- there are barriers - due to bureaucracy - challenging to go directly to people - the stratified hierarchy suggest that there are levels to go - this might incur inefficiencies - as evidenced by the result of DSSJ being spread to 6 villages in 5 years

- DSSJ (Desa Siaga Sakit Jiwa) - Village Readiness for Mental Illness - is a Programme targets at 5 regencies in D.I.Y.

- patients that come to Grahsia from the desa (village) are usually those who have gone to the dukun for 5 to 10 times with no results

- the families usually have huge debts and lost many savings at this point in time (bcoz the demands of ube rampe from a dukun can be extremely challenging to attain) - desperate to help their kids 

- Grahsia is usually seen as the last choice to go to - the last resort

- not really possible to work with dukun because 

(1) medical practitioners see them as being of lower status (dislike to associate) - no evidence / non-scientific

(2) agama - musyrik is not good - everything is planned by God - nrimo better

(3) because of stigma, dukun many times don't identify themselves as dukun - they call themselves kiyai, religious leaders who are experts on paranormal phenomenon

- Going Forward: How can we achieve better mental wellness?

* research

* sosialisasi (psychoeducation promotion and training)

* bebas (free) pasung movement - and treat them medically and with dignity

* reduce stigma through education

* build connections between sectors 

Remark by Anita, S2 senior

(it is better to be possessed than to be mentally ill)

Ojek Pak Yanto's experiences with PMI (19/9)

When I shared with Pak Yanto that I will be visiting RSJ Grahsia today, he shared with me his experiences.

The Area

He passed by that area frequently to visit his Friend and send people to a park near there. He said there are many "orang gila" in there. Outside, there are a few. Sometimes, they are thrown out because they do not have money to pay since their family had abandoned them after some time.

Experiences with PMI @ Security Post - what they asked for

When he was working as a security guard, he recounted that there was this man who always come to where he work. He will ask for food (Nasi goreng). After which, ask for drink (Es Teh). After which, ask for cigarettes. Pak Yanto said he will buy them and give it to him. He said the man seldom talk to others, even though he's gila. But according to Pak Yanto, he seem to trust Pak, so Pak Yanto, will help him when he ask. Pak said the man used to be a mahasiswa until stress proved too much to take.

University students' stress in kota pelajar?

A Friend who died

Pak Yanto said he had a Friend who had problems with his thinking. Especially when the weather gets hot. He will show signs of distress and become angry easily. He will often ask food, drinks and cigarettes from Pak. He didn't used to be like that. Passed away recently.

Pak's attributions of expressions of anger as a mark of PMI 

On the way x4

Pak Yanto pointed out to me 4 times on my 15 minutes journey from my rumah kos to UGM's library, people on the streets who he claims are orang gila.

There was a man who looks decently dressed but was hunched over sitting along the pavement with his head buried, under the hot sun.

There was a "mahasiswa" (young) according to Pak, along the street talking to himself. 

There was a woman (presumably in her 50s) who was dressed in clothes that were a little tattered and torn. She was toying with garbage and had a bicycle beside her loaded at the sides with plastic bags full of "garbage".

Appearance - untidy

Signs - talking to self

Abnormal - sitting under the sun

Living around PMI 

I asked Pak if there were orang gila in his community. He said yes! But the guy was often in his house, and does not disturb others. He said there are people in the community that doesn't like him. He's okay with him.

Peaceful co-existence? An uneasy peace? - rukun 

Why did people not like him? 

Peer Aulia: Religious fanaticism and ODGJ (14/9)

Aulia's sharing:

Religious fanaticism - phenomenon in Central Java 

- fanaticism - prejudice - group polarisation 

- Same Allah but different religious practices - clash in Central Java 

On ODGJ

- first word: gangguan

- dukun for orang Desa (uneducated)

- people approach kyai too (but after consultation, just drink water, not psychiatric medicine) - opportunity for collaboration?

- she don't believe in dukun or kyai

- will recommend friend to seek psychological help should he/she exhibit symptoms 

- perspective towards medicine?