Lesley A. Cullen

Comparison of knowledge and psychological well-being between patients with a short disease duration (≤1 year) and patients with more established rheumatoid arthritis (≥10 years duration)

Patients with rheumatoid arthritis (RA) of short disease duration (i.e. < or = 1 year) compared with patients of longer disease duration (i.e. > or = 10 years) in terms of RA knowledge, symptoms of anxiety, symptoms of depression and disease acceptance. In addition, the predictors of psychological distress (i.e. symptoms of anxiety and depression) were examined. Data were collected by self-administered questionnaires. As expected, patients with more established disease were significantly older and had more physical dysfunction. However, there were no statistically significant differences on anxiety, depression, acceptance of illness, pain or knowledge about RA. The need for education regarding RA and its implications was expressed by all participants regardless of disease duration. Illness acceptance beliefs were identified as significant predictors of both anxiety and depression.

Does arthritis influence perceived ability to fulfill a parenting role? Perceptions of mothers, fathers and grandparents.

The presence of a painful, disabling chronic disease may have implications for perceived ability to fulfill a parenting role. The purpose of this research was to examine the realities of parenting from the perspectives of mothers, fathers and grandparents with arthritis using a combination of methods: a cross sectional survey and in-depth focus group discussions. There was consensus that pain, fatigue and restricted physical functioning combined to interfere with the parenting role. Overall, approximately 35% of the sample had experienced difficulties attributed to arthritis. A gender difference emerged with women reporting more difficulties in relation to caring for babies and toddlers, whereas men reported more problems as children grew older. Key themes concerned: physical limitations; practical and caring issues; social factors; emotional response; hereditary risks and safety issues. Perceived inability to fulfill parenting roles resulted in feelings of frustration, guilt, anger and depression. A number of positive outcomes were mentioned including childrens increased awareness of the needs of others. Limitations of the methodological approach adopted are discussed.

A job-seeking self-efficacy scale for people with physical disabilities: preliminary development and psychometric testing

People with disabilities are at an increased risk of unemployment. The role of interventions aiming to enhance the employment prospects of people with disabilities is receiving increased attention. However, evaluation is hampered by the paucity of measures specific to the needs of the target population. The purpose of the present study was to develop and conduct preliminary testing of the psychometric properties of a job-seeking self-efficacy (JSS) scale that reflected the experiences of people with physical disabilities. Job-seeking self-efficacy was defined as perceived ability to perform the skills involved in seeking employment that are salient to people with disabilities. Scale development and testing involved four studies and resulted in the 12-item JSS scale and six-item managing disability at interview (MDI) component, both of which were unidimensional and had high internal consistency. In addition, there was evidence of construct and concurrent validity. Greater jobseeking self-efficacy and perceived ability to manage disability at interview were associated with more positive psychological well-being. Only the MDI component was associated with physical functioning: lower perceived ability to manage disability at interview was associated with greater impairment of physical functioning. The pattern of associations supported the rationale for a separate component reflecting the need to resolve practical issues linked to access and availability of facilities before participation in the interview procedure per se .

‘Kiss, Cuddle, Squeeze’: The Experiences and Meaning of Touch among Parents of Children with Autism Attending a Touch Therapy Programme

The aim of this qualitative study was to explore the experiences and meaning of touch between parents and children with autism before and after attending a Touch Therapy Programme. The sample comprised 12 parents (1 father and 11 mothers) of children (1 female and 11 male) with autism. Parents were interviewed before and immediately after the 8-week programme. Pre-programme results suggested that children were controlling the experience of touch. Parents felt ‘hurt’ in response to the ‘aloof’ nature of autism, and natural parenting instincts (e.g. spontaneous cuddles) were restricted. Post-programme results suggested that children appeared totolerate touch. Parents reported that routine tasks (e.g. dressing) were accomplished more easily and that children appeared generally more relaxed. Parents reported feeling ‘closer’ to their children and felt that the touch therapy had opened a communication channel between themselves and their children.

‘I never realised how little I knew!’: A pilot study of osteoporosis knowledge, beliefs and behaviours

The aim of this study is to examine knowledge of osteoporosis (OP), health behaviours, and health beliefs among a sample of women in the West Midlands of the United Kingdom ( N = 163; mean age = 40 years). The study was cross sectional, and data were collected by self-administered questionnaires. Although women were fairly knowledgeable about some aspects of OP, gaps in knowledge were identified in relation to hereditary links, bone density scans, hormone replacement therapy (HRT), vitamin D, and specific exercise. Increased age was associated with increased perception of risk ( p = 0.003). Although receipt of OP information was predictive of knowledge ( p < .0005), the majority (65%) appeared to be largely unaware of the potential threat. There is an overwhelming need for wider dissemination of information about OP, especially targeting younger women, to halt the progression of this silent disease.

Coming Together through Touch: The Experiences of Parents of Children with Disabilities Learning the Principles of Massage.

This paper describes pilot testing of an intervention designed to provide parents of children with disabilities with the basic skills of touch therapy. The aims were 1) to gain a greater understanding of parents’ experience of caring for a child before attending the intervention and 2) to determine whether the intervention was acceptable and perceived to be of value by parents. The sample comprised sixteen parents (three couples, 9 mothers, 1 grandmother) and 13 children. The intervention comprised 8 weekly 1 ‐hour sessions, during which one therapist provided instruction in touch therapy to one parent‐child dyad. Data were collected through interviews with parents before the intervention and at 4 months. Results of pretest interviews revealed that parents’ experiences of caring for children with disabilities reflected that described in the literature (e.g., wide ranging impact on family, career and leisure activities). Furthermore, parents felt they suffered from insufficient information and support in attempts to manage their childs condition at home. Results of the post‐test interviews suggest that both parents and children found the experience of touch therapy enjoyable. Parents reported benefiting in terms of having something positive to offer, feeling more confident in their own abilities and feeling closer to their child. Children were reported to have improved sleep patterns, more relaxed muscles and improved bowel functioning. In conclusion, findings suggest that increasing parental resources in relation to their contribution to their childs care might be achieved through training in simple touch therapy techniques that can be used in the home environment.