I is for Individual

 

Individualisation of the information and new insights gained during Lifestyle Redesign® programmes enables positive changes to be made in people’s lives. Some programmes are delivered individually, such as the pressure ulcer prevention studies I learned about during my study visit, others are delivered as group sessions, such as the weight management programme I followed. All are based on an overall pre-prepared programme

The skill of the therapist enables the content to be individualised in either setting. The methods used include didactic presentation of information e.g. about occupational self analysis, peer exchange (in an individual session this might take the form of discussion), direct experience or doing something- perhaps the short term goal for that week, and lastly personal exploration or reflection about the experience and it’s relevance to one’s self.

The therapists were skilled in guiding individuals through a process that incorporated all these factors, but still allowed individuals to follow the process in a way that was relevant to them. For example, in the weight management group, individuals set a short term goal each week, these were very varied, from becoming involved in the family’s grocery shopping, to walking 5000 steps each day using a pedometer, they were relevant to the overall goal and most importantly were relevant to the individual’s daily routine at that point in time. In the pressure ulcer prevention study, the programme was delivered individually and although the therapists aimed to deliver the prepared programme, there had to be a great del of flexibility in this due to the changing and often challenging circumstances of clients lives.

Where occupational therapists are not providing an actual pre-prepared programme, it is still possible to use many of the methods used in explicit Lifestyle Redesign® programmes for the benefit of clients, this might include using a process of occupational self analysis, or being open to including and using a more ‘narrative’ approach. Once the underlying concepts are understood, they can be brought into many situations and interventions.

Funerals not Futures

' A sixteen year old homegirl named Terry, a natural beauty and the object of every homie's longing, was dressed in this magnificent, short, bright red dress...She is radiant, and the toughness often on display in the streets has been left at home. I tell her how gorgeous she looks.
"Promise me something G" she says, giddy and enlivened by all the compliments she is getting. "Promise me, that I get buried in this dress".
I'm instantly imagining the ridiculous snapshot of an old woman, at repose in her coffin, in a dress like this. But Terry envisions no such old woman.
An equally young homegirl bounds into my office one day to tell me she's pregnant. I suppose my face telegraphed, a little too clearly, a decided downsizing of my heart. Before I can say whatever I was going to say, she holds out her hand, as if to impede the words.
"I just want to have a kid before I die."'



From Tattoos on the Heart, Father Gregory Boyle (see Books tab at top of page) 

I have borrowed Father Boyle's words as they illustrate so well an issue that was being discussed at my last meeting with the Pressure Ulcer Prevention Study (PUPS) OT interveners. One of the important concepts in Lifestyle Redesign is goal setting. The discussion turned to the difficulty that the OTs often have in getting clients to engage with this concept. People are very often living 'in the moment'. This may be because they are dealing with an immediate and urgent crisis such as the threat of eviction by the end of the week unless the rent money can be found. Others may never have had a lifestyle that had any structure. Is this due to lack of external factors that provide structure such as a job? Is it more of a cultural issue e.g. a common way of thinking in the Hispanic community? Or is it due to having never had experience of planning ahead in order to achieve a goal, something that many of us learn as children or young adults e.g. planning what homework needs to be done to get an assignment finished on time? Crucially teachers and parents help with this for most people. Many of the clients in PUPS have not had this stability, support or role models earlier in life. Previous experience may well have led to an expectation of failure. Clients typically talk about 'taking it as it comes' or having 'no expectations' when the subject of setting goals comes up. Even when goals are set, they may well be derailed by some other life event. Many of the clients have past or current gang involvement- hence sustaining spinal cord injury through shootings. The passage above illustrates the mindset that Father Boyle calls planning for 'funerals not futures'. This life view and expectation completely alters the way a person engages in a programme like PUPS. Even if a client is now motivated to manage their health and want to achieve things in future, they may require support to build the skills to make it possible.

 Despite this recurring issue, clients are generally reported to be doing well. There is a low drop-out rate from the programme, possibly because the OTs go to the client rather than the client coming to them. But what are the implications for OT? There was quite a discussion about this, one that will continue. There may need to be changes to the programme outline or it may be more of a matter of skillful OT allowing realistic goals to be set and achieved- from what I have heard of from the OT interveners, this certainly seems to be happening.


For more information about Father Boyle, his work with LA gangs and Homeboy Industries, follow this link to my earlier post Pressure Ulcer Prevention Study- celebrations, challenges and homeboys.

Pressure Ulcer Prevention Study- celebrations, challenges and homeboys

The Pressure Ulcer Prevention Study (PUPS) is an ongoing study where the therapists are blinded to the methodology so I am being careful what I say about it! I continue to sit in on the meetings of the researchers- celebrating a target being reached last week:

In the interveners' meeting caseloads are starting to wind down as the current phase nears completion and the discussions are often about making sure everything is completed and that the process of clients exiting from therapy is well handled. The interveners are able to identify some clients who they feel have achieved a great deal and there was discussion about how to capture and celebrate these successes- as well as learning form the cases where there were greater challenges. Often the difficulties are due to the 'marginalised' lives that many of the participants lead- see also previous post. Not all have been involved in gangs, but violence associated with gang involvement is a common scenario for acquiring a spinal cord injury in Los Angeles.

Living on the margins of society often leads to occupational and financial deprivation. A client who has a high level spinal cord injury following a gunshot wound sustained in a gang shooting was issued with an electric wheelchair suitable for his needs, but because it would not fit through his front door it was kept outside- and soon stolen. He does not have health insurance so does not qualify to be provided with another chair for possibly some years and is therefore confined to bed or an unsuitable manual chair that makes him dependent on others and at higher risk of pressure ulcers. Someone in different social and financial circumstances might have been able to get rehoused or have their housing adapted, might have lived in a lower crime area where the electric wheelchair would not have been stolen, could have used their insurance for a replacement, might have been better able to advocate for themselves to get a replacement sooner under the circumstances.

Lack of money can be a immediate and serious challenge. Last week one of the OTs had been working to get a client in contact with agencies or charities who might be able to help him. He was on the brink i.e, within a few days, of being made homeless. He and others sometimes take part in clinical trails that they are paid for. This is seen as a legitimate and fairly common way to make some money- and has the advantage of being legal. There are websites giving advice on how to go about registering for clinical trials, follow this link to clinicaltrails.com for a flavour.

Several times the OTs have talked about the issue of 'arrested development' , not uncommon in the clients they are working with. Many of the clients sustained their injuries in their teens or early twenties, the age when gang activity is probably most common. Some of them are now much older but becoming spinal cord injured at a young and crucial stage of development into adulthood, has had a significant impact. They have often not experienced some of the usual stage of development such as having romantic or sexual relationships, completed education or had a job. Many are dependent on a care giver, often their mother, at an age when they would usually have long since been leading independent lives.
 


Homeboy Industries

 I have heard the OT interveners mention Homeboy Industries a number of times as some of their clients are involved with this initiative.

Homeboy Industries Mission: 'Jobs not Jails: Homeboy Industries assists at-risk and formerly gang involved youth to become positive and contributing members of society through job placement, training and education.' You can check out the website  by following this link.

One of the founders Father Greg Boyle has written a moving and inspiring book about his work with gang members in LA and how Homeboy Industries came into being.


Boyle, G (2010) Tattoos on the Heart- the power of boundless compassion. Free Press USA