Emancipatory occupational

therapy research and practice

with marginalised ethnic minority

clients.

Debbie Kramer-Roy

Brunel University

ENOTHE – York, October 2013

Overview

Defining citizenship

Pakistani families with disabled children

Participatory Action Research

Overview of methods and findings

Thinking about your own opportunities

Sharing stories

Redefining OT’s role with ethnic minority (client) groups

Participatory Citizenship

“Participation in civil society, community

and/or political life, characterised by

mutual respect and non-violence, and in

accordance with human rights and

democracy”.

This is a RIGHT and a RESPONSBILITY

for each citizen.

Definitions on this and the next slide are taken from ENOTHE Citizenship Working Group’s

document “Citizenship: exploring the contribution of Occupational Therapy”.

Citizenship, Occupation and

Occupational Therapy.

Participatory citizenship is expressed through the experience of belonging, by the doing of everyday occupations, by the sharing of activities/occupations with others, and by the contribution of occupations to the collective well-being and welfare of society.

Restriction of participation in occupations is also a restriction of citizenship.

Restrictions in

Participatory Citizenship

The Pakistani community is one of the most disadvantaged in the UK:

Higher levels of poverty and unemployment

Poorer housing

Higher incidence of self-reported ill-health and disability

High rate of limited English proficiency

Prejudice based on both racism and Islamophobia

A lack of faith/culturally appropriate provision of social and leisure activities

References: Office for National Statistics (2011) , Government Equalities Office (2008), Khan (2006), Modood (1997).

Added challenge of

childhood disability

A higher prevalence of childhood disability in the Pakistani community

High cost of raising a disabled child

Less likely to receive disability benefits

More difficulty in accessing health and social care

Specific issues in the Pakistani community: Blaming the mother for the child's disability

A belief in disability as God’s punishment

Lower levels of support received in the extended family and the community

High levels of distress in disabled children and their primary carers (mostly mothers).

References: Beresford (1995), Bywaters et al (2003), Chamba (1999), Fazil et al (2002), Hatton et al (2004)

Are these families able to access the following? (see slide 4)

the experience of belonging,

the doing of everyday occupations,

the sharing of activities/occupations with others

the contribution of occupations to the collective well-being and welfare of society

Choice of research method

Participatory Action Research (PAR)

An emancipatory practice aimed at helping an oppressed group to

identify and act on social policies and practices that keep unequal power relations in place – i.e. it promotes citizenship!

The lived experience and knowledge of the participants are directly valued and central to the process. PAR aims to produce knowledge and action that are directly useful to the participants and to empower them through the process of constructing and using their own knowledge

The bundling of practical and academic knowledge in order to improve the situation

References: Herr and Anderson (2005), Reason (1994)

Congruence of PAR and OT (1)

PAR is “consistent with the values of occupational therapy and occupational justice” and a particularly suitable choice of research approach.

PAR is an occupational form that gives the participants an opportunity “to develop the skills and knowledge necessary to take greater control over their own lives; in so doing, they promote their own health as well as the health of other community members”

Participants develop valuable life-skills, such as becoming more aware of their own behaviour, expressing views and opinions, working as a team, planning and decision-making.

Reference: Trentham and Cockburn (2005)

Congruence of PAR and OT (2)

Working as a team of co-researchers is very congruent with the principles of client-centred practice:

respect for the person’s skills and insights

taking responsibility for one’s own choices

enabling participation

flexibility and

keeping in view the links between person, environment and occupation

Reference: Letts (2003)

The process of PAR

A spiral of cycles

planning

action

observation of the impact of

the action

Reflection on that action and

its impact.

A dynamic process

Exploratory phase to identify

issues first

Reference: Kemmis et al (2004)

Exploratory phase in each family’s home – individual interviews, drawing, photography; observation of family interactions

Followed by separate groups for men, women and children, in which they carried out their own action research cycles

Meetings/parties to bring all families and the three group processes together

The use of PAR in this study

Key issues discussed in each group

Men:

Noted negative attitudes in the Pakistani community

Asked Imams and scholars about Islamic beliefs and myths about disability

Women:

Found the initial group meetings very supportive

Tried to set up a support group to include more Pakistani mothers

Children:

Wanted “to understand our disabled siblings better so that we can help them to be happier”

Research activities

Many different hands-on activities were used to

facilitate reflection, thinking and discussion, leading

on to planning and action.

All family members took part, at home as well as in

the groups.

A few examples follow

Disabled children – photography

Each family was

given to take pictures

of their daily lives.

Afia (9) took a self-

portrait with her

favourite doll.

Photographs elicited

much animated story

telling in several

families.

Women -

Being, Doing, Becoming, Belonging

Four paper circles cut along the

radius, each colour represents the

importance of one concept:

This mother showed how little she

felt she was allowed to ‘belong’, or

think about ‘becoming’ – she felt she

was always ‘doing’ and that that was

expected of her.

Sense of ‘being’ was very important

to her and had been influenced by

her strengthened faith and resilience

through raising her disabled child. Reference: Wilcock (2006)

… and her child

Contrast between the child’s belongingness within the immediate family and the lack of acceptance in the extended family and community, including the Mosque

an ongoing source of frustration and grief,

has significantly reduced the social contacts and support the family has

For him to be allowed to ‘belong’ was paramount for his well-being

He had little idea about what he might ‘become’ in the near or distant future.

Men

HEAD:

thinking skills: what are you good at?

EARS:

who or what do you listen to?

SHOULDERS:

what responsibilities weigh heavily?

TRUNK:

how do you maintain balance in your life?:

home / work / relaxation / leisure

HANDS:

in what ways do you help family members?

BAG:

what things / resources do you have

or can you use?

FEET:

what is your foundation?:

e.g. values, worldview, etc.

what ‘HATS’ do you wear? (roles)

EYES:

what is your vision?

MOUTH:

language and communication skills

HEART:

social skills and network /

who is important to you?

HANDS:

what practical skills are you good at?

LEGS:

what steps could you undertake

to change life for the better?

Children – Feelings Cube

Initially children were

superficial and ‘too’

positive

Feelings cube had 3

positive and 3

negative feelings.

After rolling the dice

the child told a story

about when they felt

that way (Gibbs et al, 2002, p72)

Story book

Possible titles offered:

“What I would like my

friends to understand

about my brother”

“Flip-sides: 3 things I

both do and don’t like

about my brother”

“It’s not fair”

“Once upon a time

my brother….”

“Why?”

Time for your own ideas!

Identify a ethnic minority client or population group in your context

What are the restrictions in their “participatory citizenship”?

How do you / could you facilitate this group’s participation in daily life / community / society?

Present your ideas as a picture, poem, role play or any other creative / visual form.

Redefining OT?

How do we conceptualise the role of OT

in facilitating participatory citizenship?

Keep in mind

Occupational science / justice

Occupational therapy practice

Some feedback from the participants

Noor (mother): You got us a lot of things to think about and do – we didn’t only use it for

your project, we could use ideas generally Sadaf (mother): My other children play more with Imran, like help him draw or play with the

ball – he is happier than before. Imtiaz (father): The project clicked on my mind and I am still doing, and getting information Gulzar (father): I am more focused on understanding (him) and providing his needs Aliya (13): The purpose of the project was “for Pakistani siblings to communicate and

not feel alone” Inam (9): We played, we organised the party and had fun

Some of my own reflections:

Creative and non-verbal expression was particularly useful for those whose English was poor or who were least used to expressing their views verbally, as it made them aware of their often tacit views and feelings ad of their ability to contribute to the group process.

This PAR study has provided rich and detailed insight

(knowledge of the information kind) into the support needs of Pakistani families with disabled children, the more fundamental insight (knowledge of the wisdom kind) has been around

how we go about generating knowledge that is both valid and vital to the well-being of individuals, communities, and for larger-scale social change. Action research challenges the claims of a positivistic view of knowledge which holds that in order to be credible, research must remain objective and value free (Brydon-Miller et al, 2003)

Contact Details

Email: debbie.kramer-roy@brunel.ac.uk

Phone (office): +44 (0)1895 268678

The full thesis is available on-line: http://bura.brunel.ac.uk/handle/2438/4377 Kramer-Roy, D (2009). Exploring the support needs of

Pakistani families with disabled children: a participatory action research study. Doctoral thesis. London: Brunel University.

Beresford, B., 1995. Findings: The Needs of Disabled Children and their Families. Social Care Research 76. York: Joseph Rowntree Foundation.

Bywaters, P., Ali, Z., Fazil, Q., Wallace, L. And Singh, G., 2003. Attitudes towards disability amongst Pakistani and Bangladeshi parents of disabled children in the UK: considerations for service providers and the disability movement. Health and Social Care in the Community, 11(6), pp. 502 - 509.

Chahal K. & Iqbal Ullah, A., 2004. Experiencing ethnicity: discrimination and service provision. York: Joseph Rowntree Foundation. Available at: http://www.jrf.org.uk/sites/files/jrf/914.pdf [Accessed 15/10/13].

Chamba, R., Ahmad, W., Hirst, M., Lawton, D. And Beresford, B., 1999. On the Edge. Minority ethnic families caring for a severely disabled child. Bristol: The Policy Press.

College of Occupational Therapists, 2002. From Interface to integration. A strategy for modernizing occupational therapy services in local health and social care communities. London: COT.

Equal Opportunities Commission (2004). Women and Men in Britain; Ethnic Minority Fazil, Q., Bywaters, P., Ali, Z., Wallace, L. And Singh, G, 2002. Disadvantage and

Discrimination Compounded: the experience of Pakistani and Bangladeshi parents of disabled children in the UK. Disability & Society, 17(3), pp. 237-253.

Gibbs, S., Mann, G. & Mathers, N., 2002. Child-to-Child: A Practical Guide. Empowering Children as Active Citizens. London: Lambeth, Southwark and Lewisham Health Action Zone and Groundwork Southwark. Available at: http://www.child-to-child.org/guide/guide.pdf [Accessed 15/10/13].

Government Equalities Office at 2008 Ethnic minority women in the UK. Available: https://www.gov.uk/government/publications/ethnic-minority-womens-poverty-and-economic-well-being--2 [Accessed 15/10/13].

Hatton, C., Akram, Y., Shah, R., Robertson, J. And Emerson, E., 2004. Supporting South Asian Families with a Child with Severe Disabilities. London: Jessica Kingsley Publishers, Ltd.

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