Until recently, long-term effects of a critical illness (CI) have received little attention from intensive care staff, who have traditionally measured outcome from an intensive care unit (ICU) by morbidity and mortality. However, it is now acknowledged that CI is a continuum that begins before ICU and continues to impact on a patient�s quality of life after they have been discharged home. Measuring health related quality of life (HRQOL) is a complex matter due to its multifaceted, subjective and dynamic nature. There has been a lack of consensus in the literature regarding the most appropriate methodological approaches and measuring instruments to use. This disparity has impeded comparison between studies. The aim of this thesis was to review the literature between January 1998 and December 2003 that focused on HRQOL for patients after a CI to identify and summarise themes and key outcomes. There were two main areas of focus - the methods used to measure the effects of the CI, and evaluation of the patient outcomes. An electronic search for relevant articles was conducted using the common clinical research databases and key words such as health related quality of life, outcomes and critical illness. Reference lists from these articles and conference proceedings were reviewed to identify further studies. There were 74 primary papers identified that reflected a number of subcategories including general ICU, Acute Respiratory Distress Syndrome (ARDS), and elderly patients. There were four categories of instruments used in the literature including those that measured acuity of illness, physical functioning, psychological functioning and HRQOL. The majority of studies used more than one measuring instrument, most of which had been previously validated. Results from the studies were diverse, but it is apparent that physical and psychological recovery from a CI may be a slow and varied process. Most studies were observational; only one randomised control study examined the benefits of a physical exercise program for patients post-hospital discharge. In general, there was no evidence of how to translate the study findings into some form of structured program to assist the patient with any identified problems. To enhance continuum of care, integration of ICU, hospital and rehabilitation services could target identified physical and psychological problems to assist patient recovery. However, strong evidence on the benefits of initiatives such as inpatient follow-up, outpatient clinics and use of ICU diaries is yet to be demonstrated.

Until recently, long-term effects of a critical illness (CI) have received little attention from intensive care staff, who have traditionally measured outcome from an intensive care unit (ICU) by morbidity and mortality. However, it is now acknowledged that CI is a continuum that begins before ICU and continues to impact on a patient�s quality of life after they have been discharged home. Measuring health related quality of life (HRQOL) is a complex matter due to its multifaceted, subjective and dynamic nature. There has been a lack of consensus in the literature regarding the most appropriate methodological approaches and measuring instruments to use. This disparity has impeded comparison between studies. The aim of this thesis was to review the literature between January 1998 and December 2003 that focused on HRQOL for patients after a CI to identify and summarise themes and key outcomes. There were two main areas of focus - the methods used to measure the effects of the CI, and evaluation of the patient outcomes. An electronic search for relevant articles was conducted using the common clinical research databases and key words such as health related quality of life, outcomes and critical illness. Reference lists from these articles and conference proceedings were reviewed to identify further studies. There were 74 primary papers identified that reflected a number of subcategories including general ICU, Acute Respiratory Distress Syndrome (ARDS), and elderly patients. There were four categories of instruments used in the literature including those that measured acuity of illness, physical functioning, psychological functioning and HRQOL. The majority of studies used more than one measuring instrument, most of which had been previously validated. Results from the studies were diverse, but it is apparent that physical and psychological recovery from a CI may be a slow and varied process. Most studies were observational; only one randomised control study examined the benefits of a physical exercise program for patients post-hospital discharge. In general, there was no evidence of how to translate the study findings into some form of structured program to assist the patient with any identified problems. To enhance continuum of care, integration of ICU, hospital and rehabilitation services could target identified physical and psychological problems to assist patient recovery. However, strong evidence on the benefits of initiatives such as inpatient follow-up, outpatient clinics and use of ICU diaries is yet to be demonstrated.

Context: The purpose of this research was to examine if the educational approach (the Approach) adopted at Kilnbarn Residential Special School (the School) secured the developmental learning pathways for its pupils. All pupils were diagnosed with Autistic Spectrum Disorder (ASD), Severe Learning Difficulties (SLD) and many had single or multiple comorbid conditions. The research sought to understand how their parents could be substantive partners and co-creators in the design, modification, and implementation of the Approach. It was a unique feature of Kilnbarn’s Approach to fulfil the potential of parents to be co-creators and co-therapists in their child’s progress. Objective: The case study became one of the instruments in which to test the School’s effectiveness in meeting the needs of its pupils. It enabled a review of the School’s methodology, curriculum and organisational practices. The Approach was designed to provide secure developmental learning pathways for its pupils, improving their quality of life and independence. Method: The case study design, was chosen as it was considered the most appropriate research model. A Parents’ Questionnaire, distributed annually over 3 consecutive years (2004-6) was the evidential basis for this study. Interviews and collected data were used to analyse and evaluate the progress of the School through parents’ eyes. Results: The combination of parents working with professionals to maximise the culture of “technical eclecticism” seems to be, in the light of this case study, best suited to the needs of children diagnosed with autism, SLD and comorbid conditions. The child should be immersed in a consistent approach across all areas of their life. Improvements in well-being, communication and joint action routines, sleep balance, a healthy diet, physical exercise, incontinence and behaviours was observed. Conclusion The study identified that parents could be substantive partners and influencers in the design and modification of the Kilnbarn Approach. The Approach secured developmental learning pathways for its pupils and appeared to improve their quality of life. Parents as co-creators and co-therapists had regained ownership of their child’s quality of life, learning outcomes and personal development. From the experience and unique evidence of this case study schools should utilise and profit from the mass resource of their parents. It has been shown that the Kilnbarn Approach was, during the research, an effective and suitable intervention for the many children it served. It is hoped that further studies in this field will explore the concept of a “technical eclectic” approach that further validates and brings together interventions that are conceptually grounded and incorporates evidence-based focused intervention practices.

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