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      The importance of content and face validity in instrument development: lessons learnt from service users when developing the Recovering Quality of Life measure (ReQoL)

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          Abstract

          Purpose

          Service user involvement in instrument development is increasingly recognised as important, but is often not done and seldom reported. This has adverse implications for the content validity of a measure. The aim of this paper is to identify the types of items that service users felt were important to be included or excluded from a new Recovering Quality of Life measure for people with mental health difficulties.

          Methods

          Potential items were presented to service users in face-to-face structured individual interviews and focus groups. The items were primarily taken or adapted from current measures and covered themes identified from earlier qualitative work as being important to quality of life. Content and thematic analysis was undertaken to identify the types of items which were either important or unacceptable to service users.

          Results

          We identified five key themes of the types of items that service users found acceptable or unacceptable; the items should be relevant and meaningful, unambiguous, easy to answer particularly when distressed, do not cause further upset, and be non-judgemental. Importantly, this was from the perspective of the service user.

          Conclusions

          This research has underlined the importance of service users’ views on the acceptability and validity of items for use in developing a new measure. Whether or not service users favoured an item was associated with their ability or intention to respond accurately and honestly to the item which will impact on the validity and sensitivity of the measure.

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          Most cited references18

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          Evidence for the independence of positive and negative well-being: implications for quality of life assessment.

          Evidence is accumulating that positive mental states are more than the absence of symptoms, and may play an independent role in health outcomes. The aim of this study is to compare the characteristics and determinants of positive and negative mental states in a population sample. A novel analysis of data was undertaken from the General Health Questionnaire (GHQ-30) which was completed by 6,317 participants in the Health and Lifestyle Survey at Time 1 and 3,778 at Time 2, 7 years later. We derived a positive well-being scale (POS-GHQ) based on positive responses to the positive items of the GHQ-30, and compared it to a standard symptom measure (CGHQ). Discriminant function analyses were performed to establish which demographic, health and social variables best accounted for scores on each scale. The distributional properties of the two scales, together with the results of the discriminant analyses, demonstrate a degree of independence between positive and negative well-being. Over one third of the sample obtained either low scores on both positive and negative well-being measures or high scores on both measures. Disability and lack of social roles were important determinants of psychological symptoms, but had less influence on positive well-being. Having paid employment was an important determinant of positive well-being but had less influence on psychological symptoms. We also found that 7-year mortality was predicted more strongly by the absence of positive well-being than by the presence of psychological symptoms. These findings point to the need to include measures of positive well-being in studies of health outcomes and quality of life assessment.
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            The experience of recovery from schizophrenia: towards an empirically validated stage model

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              Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism

              Background The estimated prevalence rate of Pervasive Developmental Disorders (PDD) in children is 6 per 1.000. Parenting children who are intellectually impaired and have PDDs is known to be linked to the impaired well-being of the parents themselves. However, there is still little available data on health-related quality of life (HRQL) in parents of children with Asperger Syndrome (AS) and High-Functioning Autism (HFA), or other PDD diagnoses in children of normal intelligence. The present study aimed to evaluate aspects of HRQL in parents of school-age children with AS/HFA and the correlates with child behaviour characteristics. Methods The sample consisted of 31 mothers and 30 fathers of 32 children with AS/HFA and 30 mothers and 29 fathers of 32 age and gender matched children with typical development. Parental HRQL was surveyed by the use of the 12 Item Short Form Health Survey (SF-12) which measures physical and mental well-being. The child behaviour characteristics were assessed using the structured questionnaires: The High-Functioning Autism Spectrum Screening Questionnaire (ASSQ) and The Strengths and Difficulties Questionnaire (SDQ). Results The mothers of children with AS/HFA had lower SF-12 scores than the controls, indicating poorer physical health. The mothers of children with AS/HFA also had lower physical SF-12 scores compared to the fathers. In the AS/HFA group, maternal health was related to behaviour problems such as hyperactivity and conduct problems in the child. Conclusion Mothers but not fathers of children with AS/HFA reported impaired HRQL, and there was a relationship between maternal well-being and child behaviour characteristics.
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                Author and article information

                Contributors
                0114 2225208 , j.connell@sheffield.ac.uk
                Journal
                Qual Life Res
                Qual Life Res
                Quality of Life Research
                Springer International Publishing (Cham )
                0962-9343
                1573-2649
                19 April 2018
                19 April 2018
                2018
                : 27
                : 7
                : 1893-1902
                Affiliations
                [1 ]ISNI 0000 0004 1936 9262, GRID grid.11835.3e, School of Health and Related Research, , University of Sheffield, ; Sheffield, UK
                [2 ]ISNI 0000 0004 1936 8868, GRID grid.4563.4, School of Health Sciences, Medical School, , University of Nottingham, ; Nottingham, UK
                [3 ]ISNI 0000 0004 1936 9262, GRID grid.11835.3e, Centre for Psychological Services Research, , University of Sheffield, ; Sheffield, UK
                [4 ]ISNI 0000 0004 1936 9262, GRID grid.11835.3e, Department of Psychology, , University of Sheffield, ; Sheffield, UK
                [5 ]ISNI 0000 0001 2322 6764, GRID grid.13097.3c, Institute of Psychiatry, Psychology & Neuroscience, , King’s College London, ; London, UK
                [6 ]The McPin Foundation, London, UK
                Author information
                http://orcid.org/0000-0003-4609-3911
                Article
                1847
                10.1007/s11136-018-1847-y
                5997715
                29675691
                3540d164-7bc5-4a71-91b4-eb521d12dcee
                © The Author(s) 2018

                Open AccessThis article is distributed under the terms of the Creative Commons Attribution 4.0 International License ( http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and indicate if changes were made.

                History
                : 28 March 2018
                Categories
                Article
                Custom metadata
                © Springer International Publishing AG, part of Springer Nature 2018

                Public health
                quality of life,recovery,outcome measure,prom,validity,service users,qualitative
                Public health
                quality of life, recovery, outcome measure, prom, validity, service users, qualitative

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