Sheila Glenn

Incidence of phantom phenomena including phantom limb pain 6 months after major lower limb amputation in patients with peripheral vascular disease

ObjectivesContentions exist regarding the true incidence of phantom limb pain (PLP) and other associated post-amputation phenomena. Recognizing and understanding these phenomena would assist in the rehabilitation of amputees. This study was designed to investigate all post-amputation phenomena in a homogenous group of amputees. MethodsProspective amputees were recruited prior to amputation of a lower limb due to peripheral vascular disease. All survivors were followed 6 months after surgery and interviewed to identify post-amputation phenomena, including phantom sensations, PLP, and stump pain. ResultsSixty amputees were recruited and 52 survived until the 6-month interview. Phantom sensations were universal, and aspects of the nonpainful phenomena, including kinetic, kinesthetic, and exteroceptive components, were identified at varying rates within the sample. PLP was found in 78.8% of the survivors, and 51.2% had stump pain. Super-added phenomena occurred in 15.4%. Links were found between PLP and stump pain (P=0.01) and PLP and the ability to move the phantom (P=0.01). No link was found between PLP and telescoping of the phantom (P=0.47). ConclusionsPhantom phenomena are associated with many myths. This study starts to unravel myth from fact, but further study is required before this enigmatic condition and its influence on rehabilitation are fully understood.

Maternal parenting stress and its correlates in families with a young child with cerebral palsy

OBJECTIVE To investigate factors predicting parenting stress in mothers of pre-school children with cerebral palsy. METHOD Eighty mothers and children participated. Mothers completed the Parenting Stress Index (PSI) and the following measures of family functioning: family support, family cohesion and adaptability, coping strategies, family needs and locus of control. Children were assessed using the Griffiths Scales and the Gross Motor Function measure. The childs home environment was assessed using Home Observation for Measuring the Environment. RESULTS Mothers had higher mean total PSI scores than the means for the typical sample; 43% had total PSI scores above the threshold for clinical assessment. Cluster analysis demonstrated five distinct clusters of families, more than half of whom were coping well. High stress items were role restriction, isolation and poor spouse support, and having a child who was perceived as less adaptable and more demanding. Lower stress items indicated that this sample of mothers found their children emotionally reinforcing and had close emotional bonds. Regression analysis showed that the factors most strongly related to parenting stress levels were high family needs, low family adaptability and cognitive impairment in the child. CONCLUSIONS The results confirmed the individuality of families, and that individual characteristics of coping and feeling in control, together with family support and cohesion, are associated with variation in amount of stress experienced in parenting a child with cerebral palsy.

Maternal experiences of preterm birth and neonatal intensive care

Thirty-six mothers of infants admitted to three neonatal intensive care units were interviewed to explore their experiences. The main enquiry focused on: (a) interactions with professional caregivers, (b) maternal feelings, perceptions and sensitivities and (c) psychological adaptation to preterm birth and events around the early new-born period. Interviews were conducted between 4 and 9 days following birth when infants were no longer considered to be critically ill. Findings highlight the crisis nature of the event for mothers and provide insight into their adaptive processes. There are indications of how practitioners might best support families in their efforts to develop their parental role.

Self‐awareness in Young Adults with Down Syndrome: I. Awareness of Down syndrome and disability

The limited literature on awareness of differences and stigma in people with intellectual disabilities is largely sociological, emphasises pathology, and has rarely used a developmental perspective with representative samples. Interviews, photographs and standardised tests were used to investigate such awareness with 77 young adults with Down syndrome and their parents. Awareness and social categorisation were significantly associated with verbal mental age, and closely approximated the typical social‐cognitive developmental sequence. No associations were found between awareness and chronological age, parent telling, gender, and mainstream experience. Only those with verbal mental ages from around 8 years were making relative social comparisons and beginning to form complex social categories of Down syndrome/disability. Around 13% were rated as showing a negative emotional reaction to Down syndrome/disability, and most of these were male. A similar percentage, mostly female and with higher verbal mental ages, discussed concerns and limitations. Even so, they all had high self‐esteem and awareness of Down syndrome and disability did not appear to be a major issue. A number of coping mechanisms to maintain a positive sense of self were suggested. It is argued that both sociological and developmental models are required to inform parent and professional attempts to facilitate self‐awareness.

A randomised controlled study of reflexology for the management of chronic low back pain

The use of complementary and alternative medicine (CAM) for the management of chronic low back pain (CLBP) continues to rise. However, questions regarding the efficacy of many CAM therapies for CLBP remain unresolved. The present study investigated the effectiveness of reflexology for CLBP. A pragmatic randomised controlled trial was conducted. N=243 patients were randomised to one of three groups: reflexology, relaxation, or non‐intervention (usual care). All completed a questionnaire booklet before and after the treatment phase, and at six months follow up. This measured their general health status, pain, functioning, coping strategies and mood. After adjusting for pre‐treatment scores repeated measures ANCOVA found no significant differences between the groups pre and post treatment on the primary outcome measures of pain and functioning. There was a main effect of pain reduction, irrespective of group. Trends in the data illustrated the pain reduction was greatest in the reflexology group. Thus, the current study does not indicate that adding reflexology to usual GP care for the management of CLBP is any more effective than usual GP care alone.

Evaluation of Self by Young People with Down Syndrome

There have been relatively few studies of self-esteem with young people with moderate and severe intellectual disability. One reason for this is likely to be measurement difficulties. The purpose of the present study was to assess the usefulness of three measures of self-esteem in 72 young people with Down syndrome aged from 17 to 24 years. Forty-five young people, mean VMA 5 years 10 months, were assessed on the Pictorial Scale of Perceived Competence and Social Acceptance for Young Children and the Joseph PreSchool and Primary Self-Concept Screening Test. Nineteen young people, mean VMA 8 years 9 months, completed the Self-Perception Profile for Learning Disabled Students. Validity was assessed by reading scores and by interviews with the young people and their parents. Eight young people with the most severe intellectual disability could not do any test; the remainder were able to respond to the format of the appropriate tests. On all measures they rated themselves positively. Internal consistency estimates were high, but validity was only demonstrated for the Self-Perception Profile for Learning Disabled Students, supporting its use with the young people who had VMAs of around 7 years. Evaluation of self also showed a standard developmental trend.

Trends and outcomes in educational placements for children with Down syndrome

ABSTRACT This paper reviews selected British studies over the past 35 years with respect to: (a) the numbers of children with Down syndrome attending different types of preschool facilities and schools, and (b) any evidence for progress in the different types of school. It concludes that there has been a significant shift in attendance from schools for children with severe learning disability, to those for moderate learning disability, to mainstream. This is mainly associated with changes in attitude towards children with Down syndrome and local education authority (LEA) policy on integration. Within the support given at the time of the studies, estimates indicate that approx. 70‐80 per cent of children with Down syndrome could commence their educational careers in integrated or mainstream facilities, approx. 35‐40 per cent could be expected to complete their primary education in mainstream schools and approx. 20‐25 per cent in secondary mainstream schools. However, some LEA areas are reporting much highe...

Parents' Reports of Young People With Down Syndrome Talking Out Loud to Themselves

Despite parental concerns about young people with Down syndrome talking out loud to themselves (using private speech), there is virtually no research literature on this behavior. In that which exists, investigators have largely interpreted the behavior within a pathological framework. An alternative perspective is that self-talk is developmentally appropriate for these young people. Parents of 78 young people with Down syndrome, age 17 to 24 years, were asked whether their offspring had ever used private speech. Results confirm the universality of private speech and its developmental pattern. No association was found between private speech and behavior problems, communication difficulties, or social isolation. Talking out loud to self by young people with Down syndrome should be seen as adaptive, and not an indication of pathology.

Physical activity and psychological well-being in children with Type 1 diabetes

Abstract Physical activity and psychological well-being contribute to positive lifestyle and well-being in youngsters who have Type 1 diabetes. The aims of this study were to objectively assess the physical activity levels of children with Type 1 diabetes, and investigate associations between physical activity levels, psychological well-being and HbA1c. Thirty-six children, mean age 12.8 years, participated in the investigation. Physical activity was assessed using heart rate monitoring over four days. Children further completed the Diabetes Quality of Life for Youths Questionnaire, the Physical Self-Perception Profile for Children and the Self-Efficacy for Diabetes Scale. Routine outpatient HbA1c measurements were recorded. There were no significant associations between psychological well-being and physical activity, or HbA1c and physical activity, thus suggesting physical activity does not directly relate to psychological well-being in children with Type 1 diabetes. It may be that the effect of physical activity differs from that in children without Type 1 diabetes because of the place of physical activity within diabetes management and the need to balance this with insulin dosage and dietary intake to maintain blood glucose levels.

Typical or Pathological? Routinized and Compulsive-Like Behaviors in Children and Young People With Down Syndrome

Routinized and compulsive-like behaviors (RCB) are common in typically developing children and in children and adults with Down syndrome, but what functions do they serve? Parents completed questionnaires for RCB, behavior problems, and adaptive behaviors. Children who had Down syndrome had significantly higher levels of RCB than did the typically developing children at all MAs; RCBs were positively associated with adaptive behaviors for younger MA and CA groups, but not older MA children and all adults with Down syndrome. For children with Down syndrome and MAs over 5 years and all adults, RCBs were associated with behavior problems. We concluded that RCBs support developmental progress for all children with MAs less than 5 years, but may have different functions for older individuals.