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Trudie A Lang,
Nicholas J White,
Hien Tinh Tran,
Jeremy J Farrar,
Nicholas P J Day, Raymond Fitzpatrick,
Brian J Angus,
Emmanuelle Denis,
Laura Merson,
Phaik Yeong Cheah,
Roma Chilengi,
Robert Kimutai,
Kevin Marsh
PLoS Neglected Tropical Diseases 01/2010; 4(6):e619. · 4.69 Impact Factor
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ABSTRACT: The compulsory treatment of anorexia nervosa is a contentious issue. Research suggests that patients are often subject to compulsion and coercion even without formal compulsory treatment orders. Research also suggests that patients suffering from anorexia nervosa can change their minds in retrospect about compulsion.
Qualitative interviewing methods were used to explore the views of 29 young women concerning compulsion and coercion in the treatment of anorexia nervosa. The participants were aged between 15 to 26years old, and were suffering or had recently suffered from anorexia nervosa at the time of interview.
Compulsion and formal compulsory treatment of anorexia nervosa were considered appropriate where the condition was life-threatening. The perception of coercion was moderated by relationships. What mattered most to participants was not whether they had experienced restriction of freedom or choice, but the nature of their relationships with parents and mental health professionals.
People with anorexia nervosa appear to agree with the necessity of compulsory treatment in order to save life. The perception of coercion is complex and not necessarily related to the degree of restriction of freedom.
International Journal of Law and Psychiatry 11/2009; 33(1):13-9. · 1.19 Impact Factor
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ABSTRACT: The compulsory treatment of anorexia nervosa is a contentious issue. Research suggests that psychiatrists have a range of attitudes towards patients suffering from anorexia nervosa, and towards the use of compulsory treatment for the disorder.
A postal self-completed attitudinal questionnaire was sent to senior psychiatrists in the United Kingdom who were mostly general adult psychiatrists, child and adolescent psychiatrists, or psychiatrists with an interest in eating disorders.
Respondents generally supported a role for compulsory measures under mental health legislation in the treatment of patients with anorexia nervosa. Compared to 'mild' anorexia nervosa, respondents generally were less likely to feel that patients with 'severe' anorexia nervosa were intentionally engaging in weight loss behaviours, were able to control their behaviours, wanted to get better, or were able to reason properly. However, eating disorder specialists were less likely than other psychiatrists to think that patients with 'mild' anorexia nervosa were choosing to engage in their behaviours or able to control their behaviours. Child and adolescent psychiatrists were more likely to have a positive view of the use of parental consent and compulsory treatment for an adolescent with anorexia nervosa. Three factors emerged from factor analysis of the responses named: 'Support for the powers of the Mental Health Act to protect from harm'; 'Primacy of best interests'; and 'Autonomy viewed as being preserved in anorexia nervosa'. Different scores on these factor scales were given in terms of type of specialist and gender.
In general, senior psychiatrists tend to support the use of compulsory treatment to protect the health of patients at risk and also to protect the welfare of patients in their best interests. In particular, eating disorder specialists tend to support the compulsory treatment of patients with anorexia nervosa independently of views about their decision-making capacity, while child and adolescent psychiatrists tend to support the treatment of patients with anorexia nervosa in their best interests where decision-making is impaired.
Child and Adolescent Psychiatry and Mental Health 01/2009; 2(1):40.
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ABSTRACT: Our objective was to develop a validated questionnaire that can measure the extent to which dimensions of caring affect the health of carers of patients with motor neuron disease. An initial 190-item questionnaire was developed from in-depth interviews, focus groups and two pilot studies with carers. Factor analysis was applied to the data obtained from a large survey in the UK that identified the underlying dimensions of caring. The newly formed scales were tested for reliability using Cronbach's alpha, and for construct validity. The SF36-v2 was the benchmark instrument on which correlations were made to ascertain the relationship with carers' health. A 34-item instrument was developed which has demonstrated promising evidence of internal reliability and validity for six scales: emotional well-being, physical well-being, self care, disturbed sleep, carers' support needs and statutory services. High correlations were found with the Mental Component Score summary scale of the SF-36v2 (0.40-0.66). The development and testing of the MNDCQ indicates that as the carers' score on the MNDCQ increases, suggesting a higher level of burden, they are more likely to report poor health. Further longitudinal studies are needed to further test the instruments' ability to detect change over time.
Amyotrophic Lateral Sclerosis 01/2009; 10(5-6):463-9. · 3.40 Impact Factor
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ABSTRACT: The aim of this study was to use family-assessed instruments and details of children's impairments to explore factors affecting the activities and participation of children with cerebral palsy (CP). A postal survey was conducted with families of a geographically defined population of children with CP aged 6 to 12 years. Family-assessed indices of children's activities and participation were the Activities Scale for Kids (ASK) and Lifestyle Assessment Questionnaire (LAQ-CP). Families also assessed children's abilities using the Gross Motor Function and Manual Ability Classification Systems (GMFCS; MACS). Details of children's impairments were available from the 4Child epidemiological database and used with the GMFCS and MACS as explanatory variables in multiple regression analyses to identify their effect on children's activities and participation. Families of 175/314 (56%) children returned an assessment using the GMFCS and 129 (41%) children participated fully by returning all the questionnaires. Full participants (72 males, 57 females) did not differ from those who did not take part by their age, sex, CP characteristics, or associated impairments: GMFCS Level I-25, Level II-43, Level III-15, Level IV-14, Level V-23; MACS Level I-14, Level II-30, Level III-18, Level IV-13, Level V-13. Scores for the ASK and LAQ-CP Physical Independence and Mobility domains were predicted well by children's movement, manual, and intellectual disability, and also, to some extent, by the presence of seizures or speech problems. LAQ-CP domains for Economic and Clinical Burden and Social Integration were not well explained by children's abilities and impairments. Family assessment, therefore, offers a useful method for measuring children's activities and participation; however, currently available instruments do not fully represent all the domains in the International Classification of Functioning, Disability and Health. Children's abilities only partially explain their activities and participation.
Developmental Medicine & Child Neurology 01/2007; 48(12):954-61. · 2.92 Impact Factor
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ABSTRACT: The aim of this study was to determine the reliability of family and professional assessment of manual ability using the Manual Ability Classification System (MACS) for children with cerebral palsy (CP) in the UK. Families who were taking part in a study measuring the activities and participation of children with CP were invited to classify their child's manual ability using the MACS. Postal surveys were conducted with the families and health professionals nominated by the families. Perfect agreement was assessed as a percentage; chance-corrected agreement was measured using Cohen's kappa (kappa), and reliability was determined using the intraclass correlation coefficient (ICC). Families of 91/128 (71%) children responded to the survey (53 males, 38 females; mean age 9y 11mo [SD 1y 11mo], range 6-12y) out of whom 88 indicated a single MACS level. Seventy-two children (82%) were classified with spastic CP, 12 (14%) with dyskinesia, two (2%) with ataxia, and two (2%) were not classified. There were 21, 27, 11, 10, and 19 children who were classified by their families in Gross Motor Function Classification System Levels I to V respectively; 14, 30, 18, 13, and 13 children classified by their families in MACS levels I to V. The survey of health professionals generated 60/71 (85%) responses from physiotherapists, 55/58 (93%) responses from paediatricians, and 21/24 (88%) responses from occupational therapists. There was perfect agreement between families and professionals for more than 50% of children; the indices of chance-corrected agreement ranged from kappa=0.3 to 0.5, and the reliability coefficients ranged from ICC 0.7 to 0.9. Indices of agreement and reliability between families and professionals were equivalent to those between different professionals. The MACS, therefore, offers a valid and reliable method for communicating about the manual ability of children with CP. Families and professionals may not always agree precisely on a MACS level, particularly if children's performance of manual tasks varies in different environments.
Developmental Medicine & Child Neurology 01/2007; 48(12):950-3. · 2.92 Impact Factor
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ABSTRACT: The aim of this study was to determine the reliability of family and professional assessment of manual ability using the Manual Ability Classification System (MACS) for children with cerebral palsy (CP) in the UK. Families who were taking part in a study measuring the activities and participation of children with CP were invited to classify their child's manual ability using the MACS. Postal surveys were conducted with the families and health professionals nominated by the families. Perfect agreement was assessed as a percentage; chance-corrected agreement was measured using Cohen's kappa (κ), and reliability was determined using the intraclass correlation coefficient (ICC). Families of 91/128 (71%) children responded to the survey (53 males, 38 females; mean age 9y 11mo [SD 1y 11mo], range 6–12y) out of whom 88 indicated a single MACS level. Seventy-two children (82%) were classified with spastic C P, 12 (14%) with dyskinesia, two (2%) with ataxia, and two (2%) were not classified. There were 21, 27, 11, 10, and 19 children who were classified by their families in Gross Motor Function Classification System Levels I to V respectively; 14, 30, 18, 13, and 13 children classified by their families in MACS levels I to V. The survey of health professionals generated 60/71 (85%) responses from physiotherapists, 55/58 (93%) responses from paediatricians, and 21/24 (88%) responses from occupational therapists. There was perfect agreement between families and professionals for more than 50% of children; the indices of chance-corrected agreement ranged from κ=0.3 to 0.5, and the reliability coefficients ranged from ICC 0.7 to 0.9. Indices of agreement and reliability between families and professionals were equivalent to those between different professionals. The MACS, therefore, offers a valid and reliable method for communicating about the manual ability of children with C P. Families and professionals may not always agree precisely on a MACS level, particularly if children's performance of manual tasks varies in different environments.
Developmental Medicine & Child Neurology 11/2006; 48(12):950 - 953. · 2.92 Impact Factor
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ABSTRACT: Carers of people with MND may experience changes to their health and lifestyle. Statutory and voluntary organizations are able to support the carer in various ways. This review investigates the personal impact on carers and their experiences of service provision. A systematic search of online and grey literature was made for the period 1994-2004. Thirty-two key texts were retrieved and a narrative synthesis conducted. The main themes were: 1) Impact on carer: general health, emotional state, life satisfaction, socio-economic concerns, relationships, and protective factors; 2) Experience of service provision: primary care, health professionals, social care, written information, and voluntary organizations. There is a paucity of written documentation on the experience of assisting someone with MND. Data collected are diverse and sometimes contradictory. Sample sizes are often small and generalization difficult. Main findings show that maintenance of social support, activities, and a positive outlook may lessen the chance of ill health arising from long hours spent caring, and having a named coordinator may assist with access to resources, and provide practical and emotional support during and after the caring role. Carers may become ill themselves unless adequate support is given to them throughout the course of the disease.
Amyotrophic lateral sclerosis: official publication of the World Federation of Neurology Research Group on Motor Neuron Diseases 10/2006; 7(3):132-41. · 3.09 Impact Factor
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ABSTRACT: To review evidence relating to the measurement properties of older people specific self-assessed, multi-dimensional measures of health status.
Systematic literature searches to identify instruments. Pre-defined criteria relating to reliability, validity, responsiveness, precision and acceptability.
A total of 46 articles relating to 18 instruments met the inclusion criteria. Most evidence was found for the OARS Multidimensional Functional Assessment Questionnaire (OMFAQ), CARE, Functional Assessment Inventory (FAI) and Quality of Life Profile--Seniors Version (QOLPSV). Most instruments have been evaluated in single studies. Four instruments have evidence of internal consistency and test-retest reliability--LEIPAD, Philadelphia Geriatrics Centre Multilevel Assessment Inventory, Perceived Well-being Scale, Wellness Index (WI). Two instruments lack evidence of reliability--Brief Screening Questionnaire, Geriatric Quality of Life Questionnaire (GQLQ). Older people contributed to the content of the GQLQ, QOLPSV and WI. Most instruments were assessed for validity through comparisons with other instruments, global judgements of health, or clinical and socio-demographic variables. Limited evidence of responsiveness was found for five instruments--GQLQ, OMFAQ, PGCMAI, QOLPSV, Self-Evaluation of Life Scale (SELF).
Although most evidence was found for the OMFAQ this was largely for the ADL domain; evidence for reliability and responsiveness is limited. Limited evidence of reliability, validity and responsiveness was found for the PGCMAI, QOLPSV and SELF. The lack of evidence for measurement properties restricts instrument recommendation. Instrument content should be assessed for relevance before application and the concurrent evaluation of specific and widely used generic instruments is recommended. Several instruments, including the BSQ and EASY-Care, were developed recently and further evidence of instrument performance is required.
Journal of Evaluation in Clinical Practice 09/2005; 11(4):315-27. · 1.23 Impact Factor
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International Journal of Law and Psychiatry 26(6):627-45. · 1.19 Impact Factor
