Changes in quality of life and coping among people with multiple sclerosis over a 2 year period

There is a need to investigate the impact of different coping strategies on quality of life (QOL) of people with multiple sclerosis (MS), in order to better inform intervention programs for this population. This study evaluated the relationship between QOL and coping over a 2 year period among people with MS. Participants were 382 people with MS (144 male, 238 females) and 291 people without a neurological or other chronic illness from the general population (101 males, 190 females). People with MS experienced lower QOL than the control group in the domains of global QOL, independence, social and spiritual QOL scales, as well as the problem solving and social/emotional support coping scales. Interestingly, people with MS experienced higher psychological QOL than the general population, and higher detachment and focusing on the positive coping. Over time, people with MS demonstrated increases in their global QOL as well as in their social/emotional support coping. Women demonstrated higher levels than men of global QOL and Social/emotional support coping. The results of these findings have implications for information and intervention programs for people with MS.

Guideline for the non-surgical management of hip and knee osteoarthritis

Introduction: Chronic disease is a major public health burden on Australian society. An increasing proportion of the population has risk factors for, or at least one, chronic disease, leading to increasing public health costs. Health service policy and delivery must not only address acute conditions, it must also effectively respond to the wide range of health and public service requirements of people with chronic illness.^1,2 Strong primary health care policy is an important foundation for a successful national health delivery system and long term management of public health, and is linked to practical outcomes including lower mortality, decreased hospitalisation and improved health outcomes.¹ National strategic health policy has recently given increased recognition to the importance of chronic disease management, with the Australian Federal Government endorsement of a number of initiatives for the prevention (or delay in onset), early detection and evidence based management of chronic disease, including osteoarthritis.^1,3
Chronic musculoskeletal conditions, including arthritis, account for over 4% of the national disease burden in terms of disability adjusted life years. Over 6 million Australians (almost one-third of the population) are estimated to have a chronic musculoskeletal disease; chronic musculoskeletal disease represents the main cause of long term pain and physical disability. In Australia, osteoarthritis is self reported by more than 1.4 million people (7.3% of the population4) and is the tenth most commonly managed problem in general practice.5 This number is set to rise as the elderly population grows. Osteoarthritis exerts a significant burden on the individual and the community through reduction in quality of life, diminished employment capacity and an increase in health care costs. For further details, refer to the Evidence to support the National Action Plan for Osteoarthritis, Rheumatoid Arthritis and Osteoporosis: Opportunities to improve health-related quality of life and reduce the burden of disease and disability (2004).⁶
As such, federal government health policy has identified arthritis as a National Health Priority Area and adopted a number of initiatives aimed at decreasing the burden of chronic disease and disability; raising awareness of preventive disease factors; providing access to evidence based knowledge; and improving the overall management of arthritis within the community.4 In 2002, all Australian health ministers designated arthritis and musculoskeletal conditions as Australia’s seventh National Health Priority Area. In response, a National Action Plan was developed in 2004 by the National Arthritis and Musculoskeletal Conditions Advisory Group (NAMSCAG).6 The aim of this document was to provide a blueprint for national initiatives to improve the health related quality of life of people living with osteoarthritis, rheumatoid arthritis and osteoporosis; reduce the cost and prevalence of these conditions; and reduce the impact on individuals, their carers and their communities within Australia. The National Action Plan was developed to complement both the National Chronic Disease Strategy – which is broader – and the National Service Improvement Framework for Osteoarthritis, Rheumatoid Arthritis and Osteoporosis, in addition to other national and state/ territory structures.

Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation

Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease.

Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease.

Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study.

Methods. Data collection involved in-depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2® software was used to manage the data and modelling used to illustrate concepts.

Findings. Participants used a cyclic, decision-making pattern about 'ongoing change and adaptation' as they lived with the disease. This pattern formed the basis of the model that is presented in this paper.

Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well-being in the face of change.

Relevance to clinical practice. The 'ongoing change and adaptation' model is a framework that can guide practitioners to understand the decision-making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person-centred. The model may also have relevance for people with other life limiting diseases and their care.

The relationship between stress and the symptomatology of fibromyalgia

Fibromyalgia is an unexplained but often debilitating syndrome, characterised primarily by widespread pain. This thesis provides direct evidence that physical and emotional stress exacerbates pain, fatigue and other symptoms of Fibromyalgia and supports the assertion that symptoms may be related to disordered stress-response mechanisma in the human brain. The professional portfolio presents four clinical case studies that demonstrate the utility of Acceptance and Commitment Therapy (ACT) in the psychotherapeutic treatment of people with chronic illness.

PTSD symptomatology in children and adolescents : treatment development and evaluation

This thesis developed, implemented and evaluated a cognitive-behavioural group treatment programme for children and adolescents experiencing symptoms of PTSD (Post-traumatic stress disorder). Results of the study indicate that symptoms of sleep disturbance and flashbacks, reduced markedly in the participants, providing a useful tool in reducing synptoms experiences by individuals exposed to trauma. The Professional portfolio presents four case studies that demonstrate the clinical application of the affect of chronic illness on the psychological adjustment of the sufferer and their families.

Adults with arthritic conditions and care-seeking in an attachment framework

This thesis investigated the role of care-seeking amongst adults with arthritis, using an attachment framework to help explain the inconsistent results of previous studies in regard to psychological adjustment to a chronic illness. The results highlight the importance of attachment processes in partially influencing care-seeking and coping strategies that shape psychological adjustment. The portfolio addresses the frequent co-occurence of depression with chronic medical disorders. This impacts the ability for chronic, medically ill adults to engage in self-management strategies. Four case studies are presented.

Paper 4 : Schooling, identity and social connectivity

This paper will report on the progress of a large three year Australian Research Council (ARC) grant awarded to a multidisciplinary team of researchers in Victoria, Australia. The research, A multi-disciplinary investigation of how trauma and chronic illness impact on schooling, identity and social connectivity commenced in 2007 and is known as Keeping Connected (2007). The research is a collaborative grant in partnership with the Royal Children’s Hospital Education Institute, in association with the Melbourne Graduate School of Education, University of Melbourne and the Centre for Adolescent Health, Royal Children’s Hospital. The research aims to investigate qualitatively, longitudinally and through multiple perspectives how young people construct/reconstruct identity and relationships with schooling following disruption associated with chronic illness. Using a mixed methodology, but with a central focus on longitudinal qualitative studies from the perspective of the young people, the study aims to identify key elements of disruption or continued connection, and will illuminate identity issues of people facing this disruption at different age and schooling points. The research outcomes will support education and health practices and provide a differently focused empirical contribution to the literature on education and social connection. The paper works at mixing methods qualitatively, rather than focusing on the overall mixed method design of the study. Assemblages of social capital theory and sociomateriality may be a useful standpoint for the development of our empirical contribution.

Perceptions of family functioning and self-concept in adolescent anorexia nervosa [R]

Authors have highlighted the importance of the family for the development of positive self-concept and identity, not only in mental health research but also in various developmental and social psychology fields. With the increase in the incidence and prevalence of eating disorders in Australia and around the world, some researchers have attempted to understand how aspects of family functioning affect the onset and maintenance of the chronic illness, particularly for younger patients who are still undergoing drastic psychological changes and development. This study attempted to bridge gaps in the literature examining functioning and dyadic relations in families affected by eating disorders. More specifically, this study compared the perceptions of mothers, fathers and daughters about general family functioning to determine whether any discrepancies between the perceptions of family and how these affect self-concept in adolescent girls with anorexia nervosa.

Looking after well siblings of adolescent girls with anorexia : an important parental role

Background Research has suggested that well siblings of children with chronic and life-threatening illnesses are at risk for negative outcomes and that parents’ responses to the illnesses can influence the adaptation of well siblings. Yet, parents’ efforts to look after well siblings in the context of illness are rarely considered in literature about sibling adaptation. The importance of attending to the needs of well siblings was a major theme to emerge from a qualitative analysis of the experiences of parents of adolescent girls with anorexia nervosa.

Methods In-depth interviews were conducted with 24 parents of adolescent girls with anorexia and analysed using grounded theory method.

Results The data indicated that parents viewed caring for well siblings in the context of anorexia as an important role and responsibility. Parents reported making conscious and active efforts to look after well siblings by: maintaining normality; compensating for changes to routines; protecting siblings; providing emotional support; and managing the consequences.

Conclusions This paper provides a picture of the actions parents take to help well siblings adapt to anorexia in the family. Further research is needed to develop and expand this understanding to families experiencing a wide range of chronic and life-threatening illnesses. The findings underline the importance of clinical attention and further research into the critical parental role of caring for well siblings.

The management of individuals with bipolar disorder : a review of the evidence and its integration into clinical practice

Bipolar disorder is a common, debilitating, chronic illness that emerges early in life and has serious consequences such as long-term unemployment and suicide. It confers considerable functional disability to the individual, their family and society as a whole and yet it is often undetected, misdiagnosed and treated poorly. In the past decade, many new treatment strategies have been trialled in the management of bipolar disorder with variable success. The emerging evidence, for pharmacological agents in particular, is promising but when considered alone does not directly translate to real-world clinical populations of bipolar disorder. Data from drug trials are largely based on findings that identify difterences between groups determined in a time-limited manner, whereas clinical management concerns the treatment of individuals over the life-long course of the illness. Considering the findings in the context of the individual and their particular needs perhaps besl bridges the gap between the evidence from research studies and their application in clinical practice. Specifically, only lithium and valproate have moderate or strong evidence for use across all three phases of bipolar disorder, Anticonvulsants, such as lamotrigine. have strong evidence in maintenance; whereas antipsychotics largely have strong evidence in acute mania, with the exception of quetiapine, which has strong evidence in bipolar depression. Maintenance data for antipsychotics is emerging but at present remains weak. Combinations have strong evidence in acute phases of illness but maintenance data is urgently needed. Conventional antidepressants only have weak evidence in bipolar depression and do not have a role in maintenance therapy. Therefore, this paper summarizes the efficacy data for treating bipolar disorder and also applies clinical considerations to these data when

Consumer health ICT and the patient in the middle : adopter and/or influencer?

ICT can play a vital role in facilitating quality care and support for people living with chronic illness. Recently, there has been a proliferation of ICT-enabled consumer health devices. These devices can enable individual patients more precise monitoring and control of chronic conditions, and can generate information and statistics for analysis by health professionals. The adoption of the ICT-enabled consumer technologies by patients often relies on the co-adoption of related innovations, work practices, analytical tools and information systems by their health professionals. In healthcare, adoption is influenced by other stakeholders such as health insurers, the patient's family, chronic disease support groups, etc. This paper addresses the individual adoption of ICT-enabled innovations when multiple stakeholders are involved. We report on a case study of the adoption of ICT-enabled “smartpumps” by pregnant women with Type 1 diabetes. We find that the patient should be theorised as adopter, but also as influencer under certain conditions. We develop propositions to explain adoptive behaviour as the adopter/influencer seeks to achieve congruence of interests in a stakeholder network. Our findings help explain why the adoption of ICT-enabled health innovations can occur swiftly in some situations, yet proceed slowly in others.

The delivery of a telephone coaching programme to people with type 2 diabetes by practice nurses in Victoria, Australia : a qualitative evaluation

Aim.  To evaluate telephone coaching undertaken by practice nurses in a randomised controlled trial of self-management support for people with type 2 diabetes.

Background.  Qualitative evaluation of the processes that take place in randomised controlled trials has the advantage of providing information on those variables that contribute to the success or failure of the randomised controlled trial. This additional information can be used to improve or modify chronic disease management programme designs.

Methods.  Grounded theory was used to analyse transcriptions of telephone coaching sessions between practice nurses and patient participants in the randomised controlled trial.

Findings.   Analysis of transcriptions found that patient participants had complex multiple medical conditions to manage, as well as maintaining their daily lives. Two approaches to working with this complexity by practice nurses emerged. We characterised one as ‘treat to target’ and the other as ‘personalised care’. While each approach shapes identities available to patients within the relationship with the practice nurse, the impact or effectiveness of these approaches on outcomes has yet to be reported.

Conclusions.  Telephone coaching takes place in complex social contexts as well as complex medical conditions. People with type 2 diabetes must manage their diabetes care and their care of other conditions within their social contexts. This means a constant negotiation of priorities.

Relevance to clinical practice.  Awareness of how health professional support for patients’ self-management becomes a relationship and element of the negotiated identity of patients is important in adapting clinical guideline-based protocols to achieving targets in the management of chronic illness.

Development of a multi-dimensional measure of resilience in adolescents : the adolescent resilience questionnaire

Background: The concept of resilience has captured the imagination of researchers and policy makers over the past two decades. However, despite the ever growing body of resilience research, there is a paucity of relevant, comprehensive measurement tools. In this article, the development of a theoretically based, comprehensive multidimensional measure of resilience in adolescents is described.

Methods: Extensive literature review and focus groups with young people living with chronic illness informed the conceptual development of scales and items. Two sequential rounds of factor and scale analyses were undertaken to revise the conceptually developed scales using data collected from young people living with a chronic illness and a general population sample.

Results: The revised Adolescent Resilience Questionnaire comprises 93 items and 12 scales measuring resilience factors in the domains of self, family, peer, school and community. All scales have acceptable alpha coefficients. Revised scales closely reflect conceptually developed scales.

Conclusions: It is proposed that, with further psychometric testing, this new measure of resilience will provide researchers and clinicians with a comprehensive and developmentally appropriate instrument to measure a young person’s capacity to achieve positive outcomes despite life stressors.

What are the special needs of chronically ill young people?

Although significant advances have been made in the treatment of serious disease, there remains much scope for assisting young people in adjusting to life with a chronic medical condition. Commonly, chronically ill young people experience lower emotional well being than their healthy peers. Conventional approaches to promoting emotional well being have involved referring young people and their families to an appropriate public mental health service or psychologist/psychiatrist in private practice. However, there is increasing interest in the use of peer support programs. Support groups such as the ChIPS program aim to promote positive adjustment to chronic illness by bring together young people facing similar circumstances. It is maintained that by increasing connections between chronically ill young people, emotional well being can be enhanced.