Navigating physical activity engagement following a diagnosis of cancer: A qualitative exploration.

This qualitative descriptive study explored cancer survivors' experiences of barriers and facilitators to undertaking physical activity to inform how services and professionals might offer better support. Purposive and theoretical sampling was used to recruit 25 people who were up to 5 years post-cancer diagnosis. Participants took part in face to face, semi-structured interviews, and transcripts were analysed using thematic analysis. The analysis identified five interrelated themes which represented cancer survivors' views: 1) You're on your own-a sense of abandonment post-treatment, and lack of sufficient and tailored information; 2) Dis-ease-disruption to self and identity, and a heightened awareness of physical self and fragility; 3) Becoming acclimatised-physical activity in the face of treatment-related side effects and residual impairment; 4) Importance of others-encouragement and support from health professionals, family and friends, and cancer-specific exercise groups; 5) Meanings people ascribed to physical activity-these were central and could help or hinder engagement. Our findings suggest being able to live well and re-engage in meaningful activities following a diagnosis of cancer is both complex and challenging. There appear to be gaps in current service provision in supporting the broader health and well-being of cancer survivors.

Improving the interface between informal carers and formal health and social services: a qualitative study.

BACKGROUND: Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. OBJECTIVE: We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. DESIGN: We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. SETTING: Community setting including urban and rural areas of New Zealand. PARTICIPANTS AND METHODS: Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. RESULTS: Four key themes were derived: Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. CONCLUSION: In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience.

Understanding hope after stroke: a systematic review of the literature using concept analysis.

PURPOSE: Hope is said to be important in recovery from illness or injury, supporting adjustment, perseverance, and positive outcomes. There has been little exploration of hope in people after stroke. This is reflected in the literature, which lacks consistent definition and terminology. This purpose of this article is to clarify the concept of hope after stroke and to synthesize the findings to propose a working model of hope. METHOD: A systematic literature search was completed. Articles were included if they explored hope from the perspective of people with stroke or if hope was reported as a key finding in a study. Coding, analytic questions, and matrices were used to extract data and to compare, contrast, and synthesize conceptualizations, processes, and outcomes of hope. This was guided by a concept analysis methodology. RESULTS: The literature search identified 20 articles that met the inclusion criteria. Analysis of these articles suggested hope was conceptualized in 3 interrelated ways - as an inner state, as being outcome-oriented, and as an active process. Findings suggested that internal and external resources contributed to the development of hope. Hope was perceived to be linked with positive outcomes and functioned as a motivator and source of strength through recovery. Hope reflected elements also found in the concepts of expectations, goals, and optimism. CONCLUSION: This novel approach to analysis has furthered the understanding of hope. It has proposed a working model of hope that could be used by clinicians in considering hope with their clients and patients.

Living with arthritis--what is important?

PURPOSE: Demonstrating the effectiveness of health care interventions requires valid measurement of the impact of those interventions. However, outlining precisely what constitutes a 'good outcome' in the field of rehabilitation is no easy task and tends to rely on models proposed by 'experts' rather than people with the disabling conditions. This paper describes a study exploring outcomes that those people with a disabling condition (arthritis) consider important. METHOD: A qualitative study, interviewing 10 women with rheumatoid arthritis was carried out. The narratives were explored for categories and themes that encapsulated the perspective of the participants. RESULTS: A range of categories was identified and collated into five themes (personal/intrinsic factors, external/extrinsic factors, future issues, perceptions of normality and taking charge). CONCLUSIONS: The research supports in part, but also challenges more commonly used models of understanding the important consequences of disease and disability. The findings of the study may assist health professionals to reflect on current practice and reconsider processes used, and outcomes aimed for, in light of what patients/clients consider important.

EuroQol EQ-5D may not adequately describe the health of people with disabilities.

PURPOSE: To assess whether life-circumstances and factors other than those described in the EuroQol EQ-5D instrument have a systematic influence on how the same EuroQol health-state is valued. METHOD: A simulation exercise whereby health professionals were asked to rate the health-state of 16 case-scenarios. Each case-scenario was designed to describe the same EuroQol health-state but was varied systematically using a 4 by 2 factorial design, in terms of ability to work, ability to perform usual leisure activity, age and type of disability. A convenience sample of 41 health professionals studying towards a postgraduate Diploma in Rehabilitation formed the study group. RESULTS: The average valuation was significantly higher than that derived from a social tariff model. The following factors contributed to a model which explained 10% of the variability in valuation scores: characteristics of the assessor--years of experience, experience with musculoskeletal disorders, and characteristics of the scenario--disability type, ability to work and ability to perform usual leisure activities (beta weights ranged from 0.093 to 0.253). Ability to perform usual leisure activities was associated with the greatest influence on the valuation rating. Additionally, professional type had a significant influence on rating with general practitioners giving significantly lower valuations. CONCLUSIONS: The same health-state, as defined by EuroQol EQ-5D cannot be regarded as describing similar life-circumstances, sufficient to be valued in the same way. Factors specific to the 'valuer' (experience and professional type) and specific to the 'valuee' (disability type, ability to work or perform usual leisure activities) that are not included in the EQ-5D description are significantly associated with different valuation scores. Caution should be used in applying valuations obtained from social tariff models to a disabled population.

Brain injury - the perceived health of carers.

PURPOSE: This paper explores the perceived health and reported level of strain in the primary carers of severely brain injured individuals, 15 - 18 months after discharge from inpatient rehabilitation. METHOD: Seventy carers took part in a prospective descriptive study utilizing a semistructured interview and standardized measures including the SF36, The Carer Strain Index and the Relative Questionnaire. Functional consequences for the injured person were also assessed. RESULTS: The SF36 demonstrated a trend towards lower perceived health for carers than that reported in the general population. Neither perceived health status nor level of strain differed significantly according to the type of injury sustained (haemorrhagic or traumatic) nor initial severity of injury. Factors that contributed to carers having worse health status included the injured person's level of disability and interpersonal factors such as the nature of the relationship, with spouses having lower perceived health status than parents. CONCLUSIONS: Irrespective of cause of injury, generalised health consequences result for the carers of those with disabling consequences of brain injury. Factors independent of the injured individual themselves (such as the nature of the relationship to the carer) need to be taken into consideration when exploring wellbeing of carers and planning services.

Information needs of families when one member has a severe brain injury.

Despite calls for health and social services to respond to the needs of informal carers, there is little evidence to guide practioners in the best way to provide support and/or information in situations of complex need such as brain injury. This study addressed such an intervention in a prospective descriptive study, using both qualitative and quantitative methodology. Eighty-nine patients who had been admitted to a regional neurorehabilitation unit for management of traumatic or haemorrhagic brain injuries were consecutively discharged to the community over a period of 12 months. Eighty-two of these people identified a carer who agreed to be interviewed at approximately six weeks after discharge regarding their concerns. The study identified that even soon after discharge from inpatient rehabilitation, carers wanted more information. In many cases the need for information was unrelated to either the severity of injury or level of functional deficit. In addition, requests for information were in many cases not sought spontaneously, but required prompting. Such findings have implications if interventions in this field are to have the optimum chance of succeeding in providing support and assistance.

Disability in patients following traumatic brain injury--which measure?

Head injury results in a wide range of functional sequelae. Thus, measuring solely physical aspects of functioning may fail to highlight the actual level of disability. This study compares a commonly used measure of physical disability, the Barthel Index, with three recently devised measures-the OPCS Scales of Disability, the Functional Independence Measure (FIM) and Functional Assessment Measure (FIM + FAM). Fifty-four head-injured subjects were assessed following discharge from an in-patient rehabilitation unit utilizing each measure. The majority of subjects had no detectable disability according to the Barthel Index. In contrast, only four subjects (7%) attained maximal scores for independence with the OPCS scale; two (4%) with the FIM and only one subject (2%) with the FIM + FAM. This reflected the nature of the disabilities in activities such as intellectual functioning, communication, behaviour and wider aspects of mobility measured by the OPCS, FIM and FIM + FAM but not in the Barthel Index. The relationship between all measures was significant (Spearman ranked correlations P < 0.001) but correlations were greater between OPCS, FIM and FIM + FAM than with the Barthel. The results of this study would support considering the use of scales other than the Barthel Index when describing disability following traumatic head injury.

An inter-rater reliability study of the Functional Assessment Measure (FIM+FAM).

There is an increasing demand for measures of outcome to evaluate the effects of rehabilitation interventions for brain injury from clinicians, research workers and healthcare providers and purchasers. The Functional Assessment Measure (FIM+FAM), an expanded derivative of the Functional Independence Measure (FIM), is designed specifically for this purpose for this patient group. This study examined the interrater reliability of the FIM+FAM between two independent raters, a physician and a nurse, the subjects being 30 in-patients in a neurological rehabilitation unit. The results show that the inter-rater reliability was good (kappa values 0.50 to 0.95) for all but one of the 30 items rated on the FIM+FAM. The exception (with a kappa value of 0.35) was "adjustment to limits'. Higher agreement was found for rating of physical activities than for cognitive, communication and behavioural items.

Influence of thumb sucking on peer social acceptance in first-grade children.

Chronic thumb sucking in school-age children may reduce peer social acceptance, an important contributor to social development. The influence of thumb sucking on social acceptance was assessed among 40 first-grade children, who were shown four slides of two 7-year-old children (one boy, one girl) in two poses (one thumb sucking, one not). After viewing each slide in their classrooms, the children answered 10 numerically weighted questions related to peer acceptance. To limit the possibility that the children would determine the girl and boy were the same in each pose, the slide presentation was counterbalanced across two sessions 1 week apart. Using a repeated-measures analysis of variance, the authors compared composite scores on each question for both poses. The results indicate that while in the thumb-sucking pose, the children were rated as significantly less intelligent, happy, attractive, likeable, and fun and less desirable as a friend, playmate, seatmate, classmate, and neighbor than when they were in the non-thumb-sucking pose. These findings suggest that the risk of reduced social acceptance should be added to the list of potentially harmful effects of chronic thumb sucking in school-age children.