Child: Care, Health and Development, 35(1), January 2009, pp.41-47.
Publisher:
Wiley
This study aimed to explore the information needs of parents of children with juvenile idiopathic arthritis and other rheumatic diseases. Cross-sectional, anonymous survey using a purpose-designed questionnaire, which separately assessed sources of information and topics. With respect to sources, we also asked about their degree of helpfulness, and regarding topics, we also asked about further
This study aimed to explore the information needs of parents of children with juvenile idiopathic arthritis and other rheumatic diseases. Cross-sectional, anonymous survey using a purpose-designed questionnaire, which separately assessed sources of information and topics. With respect to sources, we also asked about their degree of helpfulness, and regarding topics, we also asked about further interests (information needs). The questionnaire was sent to 146 families continuously attending our paediatric rheumatology outpatient clinic. The response rate was 79.5%. Regarding sources, those with a professional medical background were appreciated, while information from friends and family members, in particular, was not. Overall, parents considered themselves well-informed. Parents had frequently received information on core domains of medical aspects. They described deficits related to psychosocial impact, to (vocational) education and to complementary therapy. However, their interest in further information was high almost irrespective of the amount of prior information. For further tailored information and support strategies it should be taken into account that even for topics largely covered by usual medical advice, residual interest and information needs of parents remain high.
Subject terms:
information needs, long term conditions, parents, arthritis, children;
This author discusses the issues of living with the long-term condition of arthritis. It focuses on not only dealing with pain but the impact on family, emotions, working lives and self image. The author draws on the growing body of literature in psychosocial rheumatology as well as her own research. The depth of understanding offered by qualitative approaches is complemented by quantitative investigations where relevant. A substantial section of the book is devoted to interventions with a psychological basis. It focuses on the belief that anything which promotes a positive change is of vital importance in assisting people with arthritis to make the adjustments needed to attain a satisfactory quality of life. Topics covered include: arthritis and disease management; onset, diagnosis and duration of disease; life with arthritis; the psychological impact on person and family; the social impact on person and family; healthcare and patient education; psycho-educational interventions; and the agenda for the future.
This author discusses the issues of living with the long-term condition of arthritis. It focuses on not only dealing with pain but the impact on family, emotions, working lives and self image. The author draws on the growing body of literature in psychosocial rheumatology as well as her own research. The depth of understanding offered by qualitative approaches is complemented by quantitative investigations where relevant. A substantial section of the book is devoted to interventions with a psychological basis. It focuses on the belief that anything which promotes a positive change is of vital importance in assisting people with arthritis to make the adjustments needed to attain a satisfactory quality of life. Topics covered include: arthritis and disease management; onset, diagnosis and duration of disease; life with arthritis; the psychological impact on person and family; the social impact on person and family; healthcare and patient education; psycho-educational interventions; and the agenda for the future.
Subject terms:
long term conditions, psychosocial approach, psychosocial intervention, self care, self-esteem, arthritis, health education;
Health and Social Care in the Community, 16(6), November 2009, pp.628-635.
Publisher:
Wiley
... been directed to the organisation by a health professional, compared with less than one-third of those with arthritis. The study concludes that people who contact CHOs report benefits and health actions conducive to better self-management. The integration of CHOs within the wider health system, as in the case of the diabetes CHO in this study, is likely to facilitate contact.
Consumer health organisations (CHOs) - broadly defined as non-profit or voluntary sector organisations - offer a resource for supporting self-management and self-care for those with chronic illness. In order to investigate patterns of usage of diabetes and arthritis CHOs a cross-sectional computer-assisted telephone interview survey was completed by 279 people who had made contact with one of four consumer health organisations (CHOs) in Queensland, Australia, between July and August 2006. People contacted CHOs primarily to obtain further information about their condition or to access services or products. Most believed CHOs offered useful information and almost half reported that they had started exercising or changed diet following contact. More than two-thirds of diabetes contacts had been directed to the organisation by a health professional, compared with less than one-third of those with arthritis. The study concludes that people who contact CHOs report benefits and health actions conducive to better self-management. The integration of CHOs within the wider health system, as in the case of the diabetes CHO in this study, is likely to facilitate contact.
Subject terms:
long term conditions, self care, self-help groups, service uptake, voluntary organisations, arthritis, diabetes;
Journal of Adolescence, 32(2), April 2009, pp.449-454.
Publisher:
Academic Press
The objective of the study was to examine how cognitive emotion regulation strategies were related to psychological maladjustment in adolescents with a chronic disease. The sample consisted of adolescents with a diagnosis of Juvenile Idiopathic Arthritis (JIA). A self-report questionnaire was used to assess Internalizing problems and Quality of Life. The specific cognitive emotion regulation
The objective of the study was to examine how cognitive emotion regulation strategies were related to psychological maladjustment in adolescents with a chronic disease. The sample consisted of adolescents with a diagnosis of Juvenile Idiopathic Arthritis (JIA). A self-report questionnaire was used to assess Internalizing problems and Quality of Life. The specific cognitive emotion regulation strategies that were used in response to the disease were measured by the Cognitive Emotion Regulation Questionnaire (CERQ). Correlations and Multiple regression analyses showed that Rumination and Catastrophizing were the most important ‘predictors’ of psychological maladjustment in adolescents with JIA, suggesting that they should be considered as maladaptive cognitive emotion regulation strategies in response to a chronic disease such as JIA. Challenging these maladaptive cognitive emotion regulation strategies may therefore play an important role in intervention strategies.
Subject terms:
long term conditions, quality of life, young people, anxiety, arthritis, coping behaviour, depression;
International Journal of Geriatric Psychiatry, 24(7), July 2009, pp.701-708.
Publisher:
Wiley
Vascular disorders are important potential causes of cognitive impairment and common mental disorders but their specificity as risk factors has yet to be clarified. The objectives of this analysis were to compare vascular and non-vascular health problems with respect to their associations with cognitive function and common mental disorder. An analysis was carried out of cross-sectional data from the 2000 UK National Survey of Psychiatric Morbidity. The two dependent variables analysed were common mental disorder (revised Clinical Interview Schedule) and cognitive function (TICSm and animal naming) in survey participants who were aged 60-74 years (n = 2007). Associations with self-reported vascular and common non-vascular (musculoskeletal, respiratory or gastrointestinal) disorders were compared. Disability (SF-12 physical scale) was considered as a potential confounding/mediating factor). Results showed that vascular disorders were associated with impaired global cognitive function and lower memory but not verbal fluency scores after adjustment for age, gender, education and social class. No such associations were found for non-vascular disorders. Vascular and non-vascular disorders were associated with common mental disorder to a similar extent, and associations were substantially explained by disability. Lower cognitive function was specifically associated with vascular disorders. Findings for common mental disorder were more consistent with an effect of disability rather than the actual consequences of specific health complaints.
Vascular disorders are important potential causes of cognitive impairment and common mental disorders but their specificity as risk factors has yet to be clarified. The objectives of this analysis were to compare vascular and non-vascular health problems with respect to their associations with cognitive function and common mental disorder. An analysis was carried out of cross-sectional data from the 2000 UK National Survey of Psychiatric Morbidity. The two dependent variables analysed were common mental disorder (revised Clinical Interview Schedule) and cognitive function (TICSm and animal naming) in survey participants who were aged 60-74 years (n = 2007). Associations with self-reported vascular and common non-vascular (musculoskeletal, respiratory or gastrointestinal) disorders were compared. Disability (SF-12 physical scale) was considered as a potential confounding/mediating factor). Results showed that vascular disorders were associated with impaired global cognitive function and lower memory but not verbal fluency scores after adjustment for age, gender, education and social class. No such associations were found for non-vascular disorders. Vascular and non-vascular disorders were associated with common mental disorder to a similar extent, and associations were substantially explained by disability. Lower cognitive function was specifically associated with vascular disorders. Findings for common mental disorder were more consistent with an effect of disability rather than the actual consequences of specific health complaints.
British Journal of Occupational Therapy, 72(6), June 2009, pp.249-258.
Publisher:
Sage
The parents of children with juvenile idiopathic arthritis have been identified as pivotal facilitators of children's involvement in treatment regimens, including home exercise programmes. As such, parents' perspectives regarding the factors that influence participation in their children's treatment regimens, and in particular home exercise programmes, are addressed in this study. In depth, Seven key themes emerged, namely the difficult process of diagnosis, the emotional toll, medications, exercises, life revolves around arthritis, parents' relationship with their child and other family members, and parents and paid work. The implications for clinical practice and future research are discussed.
The parents of children with juvenile idiopathic arthritis have been identified as pivotal facilitators of children's involvement in treatment regimens, including home exercise programmes. As such, parents' perspectives regarding the factors that influence participation in their children's treatment regimens, and in particular home exercise programmes, are addressed in this study. In depth, semi-structured interviews were conducted with 16 families. Rigour was ensured through a rich description of participants, peer and member checking, field journals and audit trails. Four key topics related to the process - the experience of the child's diagnosis, community access and participation, treatment regimens and the impact of these regimens on the parent's roles and relationships - and were addressed. Seven key themes emerged, namely the difficult process of diagnosis, the emotional toll, medications, exercises, life revolves around arthritis, parents' relationship with their child and other family members, and parents and paid work. The implications for clinical practice and future research are discussed.
Subject terms:
long term conditions, parental attitudes, physical exercise, treatment, therapy and treatment, user views, arthritis, children, family relations;