Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia

There has been increasing interest in the way parents cope with childhood chronic illness and a shift away from merely describing the 'burdens' of care. An emphasis on coping by introducing ideas such as co-ordinated, accessible and appropriate service delivery as well as empowerment raises important policy and practice issues for public health. This paper, by drawing on qualitative material from a project evaluating service support to families caring for a child with a haemoglobinopathy, examines how parents cope with their caring responsibilities. First, it discusses the general literature on how carers respond to their role, before examining the specific literature dealing with the response of parents who look after a child with a haemoglobinopathy. Second, it presents the empirical accounts of parents who care for a child with a sickle cell disorder (SCD) or thalassaemia within the context of this broader literature. The paper concludes that all parents found caring stressful and demanding, but accept that they have to cope with the situation for the sake of the child. Parents' contact with services is an especially important contributory factor to their ability to cope and parents described how services can both hinder and support their caring role. Appropriate professional support can help reduce stress and facilitate coping by offering information, financial help and emotional support. Unsympathetic responses from professionals, or their incompetence, however, meant that many parents identified service provision as part of the problem, potentially undermining their ability to come to terms with the condition.     

Burden of illness for an employed population with chronic obstructive pulmonary disease

Abstract Chronic obstructive pulmonary disease (COPD) affects approximately 7% of Americans. COPD impacts productivity and forces 1 in 5 employees ages 45-65 years old to retire prematurely. Our objective was to quantify the direct and indirect costs of COPD in an employed population in the United States. A retrospective analysis using Thomson Reuters MarketScan commercial claims and Health and Productivity (HPM) databases (2000-2007) identified employees (ages 18-65 years) with ≥?1 COPD medical claim, ≥?6 month insurance eligibility pre and ≥?12 months post diagnosis, and ≥?12 months HPM data post diagnosis. COPD subjects were matched to non-COPD subjects using propensity scores to create a comparison group with similar characteristics. Differences in medical and pharmacy utilization and productivity (absence and short-term disability [STD] days) were examined using negative binomial regression, and cost differences using Heckman selection models. A total of 27,612 COPD patients were matched in a 1:1 ratio to 825,884 non-COPD patients; 80% were ages 36-65 years, and 59% were male. COPD employees had about twice the rate of emergency department visits and hospitalizations compared to non-COPD employees (P<0.0001). The rate of absence and STD days was approximately 1.5 times higher (P<0.0001) compared to non-COPD employees. Yearly direct and indirect expenditures were higher ($3609 and $909, respectively; P<0.0001) for COPD versus non-COPD employees. Excess utilization and associated costs of COPD to employers was quantified. By understanding these costs, employers may evaluate disease management programs and treatment to improve outcomes for employees with COPD. Improved treatment options may reduce the direct and indirect costs of COPD. (Population Health Management 2012;15:267-275).     

'Discovering' chronic illness: using grounded theory

This paper focuses on using the grounded theory method to study social psychological themes which cut across diverse chronic illnesses. The grounded theory method is presented as a method having both phenomenological and positivistic roots, which leads to confusion and misinterpretations of the method. A social constructionist version and application of grounded theory are introduced after brief overviews of the method and of the debates it has engendered are provided. Next, phases in developing concepts and theoretical frameworks through using the grounded theory approach are discussed. These phases include: (1) developing and refining the research and data collection questions, (2) raising terms to concepts, (3) asking more conceptual questions on a generic level and (4) making further discoveries and clarifying concepts through writing and rewriting. Throughout the discussion, examples and illustrations are derived from two recent papers, 'Disclosing Illness' and 'Struggling for a Self: Identity Levels of the Chronically Ill'. Last, the merits of the method for theoretical development are discussed.     

Predictors of parents seeking help or advice about children's communication development in the early years

Background Children's access to services for communication disorders is often determined by parental decisions to seek help or advice. The factors that predict whether parents seek help/advice about their child's communication development were explored in this study. Methods Parents of children in a large, community cohort of children (the Early Language in Victoria Study) were asked whether they had sought help or advice about speech and language development at 1, 2, 3 and 4 years. Child, family and environmental variables, as well as parental concern and children's communication status, were used to predict help/advice seeking. The communication abilities of those in the help‐seeking group were also evaluated. Results Gender, age, children's communication status and parental concern were consistent predictors of help/advice seeking. Significant over and under‐identification was evident, and there was preliminary evidence that children with overt communication difficulties (such as unintelligible speech) were more likely to receive help. Conclusions Parental support and education, as well as education of professionals who regularly have contact with young children, is necessary to support appropriate early identification of communication problems. Further research into service level factors such as availability and accessibility which may support or inhibit help/advice seeking is also indicated.     

Coaching parents to enable children's participation: An approach for working with parents and their children

In this paper, Occupational Performance Coaching (OPC) is presented as a means whereby occupational therapists can support parents in achieving goals for themselves and their children. OPC is a coaching intervention that assists parents to recognise and implement social and physical environment changes that support more successful occupational performance for themselves and their children. OPC utilises collaborative problem-solving within a coaching relationship in which parents are guided towards identifying and implementing effective, autonomous solutions to occupational performance dilemmas.
OPC is described in relation to the principles of contemporary practice; in particular that intervention is both family- and occupation-centred, and leads, as directly as possible, to the enablement of children's participation at home and in the community. Tentative empirical support for coaching parents draws on the supporting evidence for similar interventions in cognate disciplines. The unique features of OPC, namely, overt collaborative analysis of performance with parents and parent-initiated solution finding, are highlighted and their potential contributions to interventions currently employed by therapists are outlined. Recommendations are advanced as to how further research can support the adoption of this intervention strategy.     

The role of self-help clubs in adaptation to chronic illness and disability

The paper discusses the establishment, growth, organization, services and programs of self-help health groups and their articulation with the institution of medicine. The recent proliferation of self-help groups constitutes a social movement of consumer-initiated services. Self-help groups provide assistance, encouragement and needed services for those with chronic, disabling conditions involving a number of emotional and social adaptive problems. These are problems that are not being adequately dealt with through the acute-illness physician-patient relational model. The groups are varied in organizational structure and services provided; in degree and style of affiliation with national organizations; and relationships with hospitals and medical practitioners. In view of the functions they perform, they seem to fill an important gap in the network of agencies and professional practitioners making up the health service delivery system.     

A shared reading intervention with parents to enhance young children's early literacy skills

A pragmatic randomised controlled trial was used to investigate the effects of two forms of shared reading on children's language and literacy skills. Parents of 80 children in the preparatory year of school participated in an eight-week home reading intervention. Families were assigned to one of three groups: dialogic reading (DR), dialogic reading with the addition of print referencing (DR + PR), or an attention-matched control group. Analyses of change from pre- to post-intervention showed significant effects for the DR and DP+PR groups compared to the control group on three of the six emergent literacy measures: expressive language, rhyme, and concepts about print. At three-month follow-up assessment, the two intervention groups maintained significantly better performance on the measure of concepts about print only. These findings illustrate the potential of a brief home-based intervention for promoting children's emergent literacy.     

Parents' meetings in a pediatric unit: helping parents cope with their child's hospitalization

The various ways of helping parents of hospitalized children to cope with this situation, highlighting a method utilized at Sinai Hospital of conducting biweekly meetings for parents is addressed. Ways in which the parents have utilized the meetings, issues that have been explored, and suggestions for handling parental concerns are the focus of the paper.