Attendees' review

Using the Mayers’ Lifestyle Questionnaire to inform service development

 

Desmond Flanagan looks at lifestyle difficulties following traumatic brain injury, identified in the context of a voluntary day centre

 

 

In the well-documented impairments reported in the literature on the consequences of traumatic brain injury (TBI) (Jennett 1990), defined as an injury to the brain tissue which has occurred after birth and caused by an outside force impacting on the head, the injured survivors of such an event are often left with a life-long mixture of neurological, cognitive, and physical disabilities.

 

Once the recovery plateau has been reached, which may be several years post-injury, these disabilities often mean that the injured persons are unable to keep up with education, work, or the social activities of their pre-injury life style (Oddy et al 1978).

 

Accompanying these changes, many of the daily living skills, which were requirements prior to injury, fall into disuse as a direct consequence of the acquired disability.

 

In planning future service development at the Head Forward Centre, a voluntary sector day centre for those living in the Manchester area with the long-term problems associated with TBI, it was agreed by members of the management committee that a small survey of the attendees’ daily living skills would be an appropriate first step.

 

The setting

The activities of the Head Forward Centre are located in a sub-section of the ground floor of the Withington Methodist Church. Space for activities is very limited and at present our programme of activities is confined to providing facilities, staff and a team of volunteers to help re-animate and help develop social skills and community integration in people with TBI who may have become somewhat socially isolated from outside or peer group contacts.

 

Attendees are mainly referred to the centre by the social services and individual head injury case managers.

 

Requirement

As the ethos of the centre’s programme is non-interventionist and none of the staff or volunteers have any access to medical records or confidential information about the attendees, the aim is to assist the individual, but not to eliminate or reduce an attendee’s underlying neurological, functional, or cognitive impairment.

 

After discussion by the charity’s management committee, it was agreed that using a ‘symptom’ based questionnaire would not be appropriate to our programme model of ‘group’ rather than ‘individual’ focus. A practical life-style instrument was sought that could be easily administered, would not be too invasive of personal details, and could be used across a group of people with heterogeneous types of brain injuries, different ages, and domestic circumstances.

The respondents in this pilot survey were 20 of the centre’s regular attendees (19 male and one female), ranging in ages from 22 to 62 years, with an average post-brain injury of 14.85 years.

 

Instrument and method.

In view of the above, the Mayers’ Lifestyle Questionnaire (2) (MLSQ (2)) was selected as being the most appropriate instrument. It is a questionnaire primarily used to demonstrate a person-centred approach within occupational therapy practice for people with enduring mental health problems. The questionnaire gives service users the opportunity to identify their priority needs in relation to their quality of life before intervention begins.

 

The questionnaire addresses nine aspects of day-to-day living skills through 48 questions on: self care and daily activities; living situation; looking after others; being with others; work or voluntary employment; beliefs and personal values; finance; choices; and enjoyable activities.

 

Each attendee gave signed consent agreeing to participate in this review, and they were advised that they could complete the questions independently or with assistance from a relative or carer as needed. Completed questionnaires were given an ID number and did not include the participant’s name.

 

Results

The first part of the MLSQ (2), headed ‘Looking after yourself’ lists 15 questions about daily tasks and respondents are asked to indicate if they can perform these task ‘independently’, ‘with difficulty’ or ‘with extreme difficulty’ and the graph (table 1) gives an indication of the main areas of difficulty.

Table 1

 

 

 

 

Table 1 indicates that only two out of the 20 respondents are able to drive a car, 13 have difficulty preparing and cooking food, and 14 have difficulty managing their health problems, including medication, while 13 have difficulty being able to sleep adequately.

 

Of the tasks that the respondents were able to manage independently, 13 have no difficulty getting up in the morning at an appropriate time, 12 can maintain personal hygiene to their satisfaction, 11 can wash their clothes and 12 can use the telephone.

 

The MLSQ (2) then has sections and questions about respondents’ living situation, looking after others, and being with others. Most respondents like where they live, enjoy the level of privacy they have, and feel safe at home and in their district. They also enjoy company, feel they make friends easily and talk to and visit relatives regularly.

 

However, in direct contrast to the claim that they make friends easily, over half of the respondents admit to feeling lonely, and although four of respondents have a wife, only three felt adequately supported.

 

Questions on employment, college, beliefs, values and finance yielded answers indicating that one of the respondents worked part time and one was in shelter employment, while five do voluntary work and 13 are willing to do voluntary work. None of the respondents are students and only two feel able to study.

 

On the questions of belief and values, over half have a religious belief and like to be with others with similar beliefs, while 18 respondents are on disability benefits and 14 have enough money for their needs. Nevertheless, nine have difficulty managing their money and seven have difficulty collecting their benefits.

 

The final set of questions deal with choices. Only seven feel that they are in control of their lives, although 17 feel that they can choose what they want to do. Half of the respondents are able to do some activity independently and 14 can participate in some satisfactory activity, although only 9 respondents feel good about themselves as a person.

 

The most popular leisure activities selected across the 20 respondents were in order of preference: visiting the cinema, going to Headforward, playing pool, taking part in quizzes, crosswords, and playing dominoes. Eating out and visiting family were also favoured, while the less popular activity named included watching television, gardening, swimming, walking, and fishing.

 

Conclusions

As stated previously, the main purpose of selecting the MLSQ (2) was to identify which of the practical daily living skills listed in the ‘Looking after yourself’ part of the questionnaire the 20 individual respondents could perform ‘independently’, ‘with difficulty’, or ‘with extreme difficulty’.

 

Because these particular questions are task specific, identifying self-care problems for these 20 attendees gives us clear indications for future development in our activity programme at the Headforward Centre, if and when we have more space and staff resources.

 

In addition, the MLSQ (2) was sensitive enough to identify common decision making problems that are well recognised in TBI  (Stuss 2009) many of which are manifested in this particular group of head injured respondents. For example, 11 of the 20 respondents were assisted by a family member to complete the questionnaire, and in this predominantly male response group, they performed ‘with difficulty’ cooking, managing their health care needs, and domestic cleaning and shopping tasks.

 

Although these everyday task problems are not unusual in adult males (apart from healthcare and medication difficulties indicated here), if these TBI respondents had to live independently in the community they are likely to require active specialist training and personal support on a daily basis (Stuss 2009; Brookes et al 1987).

 

At present, 14 of the 20 respondents are living with their families or wives, four see a family member daily, and two respondents have daily support workers. These dependency needs illustrate that TBI is not only an individual’s burden, but that their families play a major role in the injured person’s ability to maintain a ‘normal’ lifestyle within the community (Brooks et al 1987; Flanagan 1998).

 

In conclusion, we found the MLSQ (2) was both a helpful indicator of potential  developments for our voluntary service and it also addressed very practical issues in an easily understood manner.

 

References

Alderman N and Baker D (2009) Beyond the shopping centre: using the multiple errands test in the assessment and rehabilitation of multi-tasking disorders. In Oddy M and Worthington A (Eds) The Rehabilitation of Executive Disorders. New York: Oxford University Press

Brooks N, Campsie L, Symington C, Beattie A and McKindley W (1987) The effects of head injury on patients and relatives within seven years of injury. Journal of Head Trauma Rehabilitation, 2:1-13

Flanagan D (1998) A retrospective analysis of expressed emotion (EE) and affective distress in a sample of relatives caring for traumatically brain-injured (TBI) family members. British Journal of Clinical Psychology, 37: 431-439

Jennett B (1990) Scale and scope of the problem. In Rehabilitation of the adult and child with traumatic brain injury (edit 2) 3-7. FA Davis Company, Philadelphia

Oddy M, Humphrey M and Uttley D (1970) Subjective impairment and social recovery after closed head injury. Journal of Neurology Neurosurgery and Psychiatry, 41: 611

Rosenthal M, Bond MR (1990) Behavioural and psychiatric sequelae. In Rehabilitation of the adult and child with traumatic brain injury. (edit 2) 179-192. FA Davis Company, Philadelphia

Stuss D T (2008). Rehabilitation of frontal lobe dysfunction: A working framework. In Oddy M and Worthington A (Eds), The rehabilitation of executive disorders (pp 1-17). New York: Oxford University Press

 

Desmond Flanagan, programme director, Head Forward Centre, Manchester. For further information visit: www.headforward.org

 

Reprinted by kind permission of Occupational Therapy News 19 (7) 2011