Readability of printed educational materials used to inform potential and actual ostomates

• ? This paper is primarily concerned with the use of readability formulas to determine the reading ease of printed education materials (PEMs) given to ostomy patients. Whilst the particular clinical focus is stoma care nursing, the content is relevant to all nurses who use printed text to inform their patients. PEMs have significant advantages in conveying information compared with verbal presentations alone.
• ? Methods to calculate readability using the Flesch, FOG and SMOG readability formulas are described. Presentation factors that affect readability are briefly reviewed, including use of ‘white space’, font size and paper colour. The problem of functional illiteracy and the need for indirect assessment of patient literacy are discussed.
• ? PEMs in use are often found to be difficult to read. Stress is identified as a potential factor in further reducing a patient's ability to deal with information.
• ? Three commercially available PEMs are evaluated for ease of reading and their score on the FOG index indicates that only about 40% of the UK population would understand them.
• ? Nurses are advised to evaluate the readability of their PEMs and to assess indirectly the literacy of their patients, so that they can more sensitively match PEMs to patient ability and need.

     

The quality and management of written information presented to women undergoing hysterectomy

• ? A study of a random sample of hospitals in England that provide information leaflets for women undergoing hysterectomy indicates a large variation in quality.
• ? In general, the findings reveal that written information for patients is given a relatively low priority.
• ? Production and dissemination of information for hysterectomy patients is somewhat ad hoc.
• ? It is not clear that any evaluation of the leaflets has been conducted to prove the efficacy of the available literature.
• ? While the majority of leaflets include information deemed essential by past hysterectomy patients, the presentation of the recovery process often implies no control for the patient, and conceives normality with a narrow perspective about what healthy behaviour means for women. The provision of a specific timetable for resumption of housework duties in 65% of the leaflets is a case in point.
• ? On the basis of the results of the survey, recommendations are made concerning the improvement of the standard of patient information leaflets.

     

Nurse involvement in cardiac rehabilitation prior to hospital discharge

Summary

• ? Interviews were undertaken with 202 men admitted to five hospitals in northeast England following an uncomplicated first myocardial infarction. The likelihood of patients speaking to a nurse about recovery or seeing a physiotherapist, dietician or specialist rehabilitation nurse, varied considerably between hospitals.
• ? Whilst virtually all patients received written information concerning some aspect of life-style change or cardiac rehabilitation, the quality and range of information, particularly with regard to information about stress or anxiety, was frequently limited.
• ? Instructions about seeing a general practitioner following discharge were often vague; formal rehabilitation programmes, where they existed, excluded some patients.
• ? The study suggests that much patient education is dependent on the provision of written information alone, and that further evaluation of the effectiveness of self-help material supported by nursing input is desirable.

     

Nurses achieve quality with pre-assessment clinics

• ? Nurses in a group of Wolverhampton Hospitals carried out a local research study to identify not only the level of patient satisfaction with pre-assessment clinics (PAC), but also what care nurses delivered in these clinics.
• ? Data were collected using both ethnographic and survey methods.
• ? Patients found the PAC visit valuable: it reduced stress and provided much needed information about the coming surgery.
• ? The skills nurses used and the tasks carried out were consistent throughout the Trust, and reflected the provision of a high standard of care.

     

Basic care of demented patients living in institutions

• ? This paper looks at the basic care of demented patients living in institutions and the distinctive characteristics of those patients.
• ? The data included in the study were collected by observing basic care situations and interviewing practising nurses.
• ? The nurses tended to look at demented patients chiefly in terms of the abilities they had lost and the disturbance they caused; less attention was given to their remaining faculties, such as their sense of humour and their ability to enjoy things and to establish contact through gestures and physical touching.
• ? Five models of nursing activity were identified: rejective, routinized, robot-like, cassette-like, and skilful.
• ? Nurses concentrated more on obligatory daily activities than on the individual needs of demented patients, the special characteristics of dementia, or encouraging spontaneous activity among demented patients.

     

Including patient preferences in nurses' assessment of older patients

• ? The refinement of a patient assessment tool for older patients, Lorensen's Self-Care Capability Scale, is described where a systematic elicitation of patient preferences is included in the assessment.
• ? This study tests a decision analytic approach as a strategy for formalizing subjective judgement, which makes it possible to include patients' own values and preferences in planning patient care.
• ? Applying this technique to patient assessment contributes to explicitly tailoring nursing care decisions to desired outcomes as preferred by individual patients.
• ? A shared approach to decision making between nurse and patient ensures a mutual understanding about goals, priorities and patient values through discussion and negotiation.
• ? This pilot study supported the merit of including patient preferences systematically in the assessment of older patients.
• ? The method provides an important decision aid for nurses in planning nursing care in accordance with patients' own values and preferences for care.

     

The nursing record as a research tool to identify nursing interventions

• ? This paper describes a study which was designed to test the feasibility of using retrospective case note abstraction of data from nursing records to identify the nursing interventions given to two groups of patients: those who had suffered a myocardial infarction and those who had sustained a fractured neck of femur.
• ? The aim of the study was to assess whether the data obtained from the records were an accurate reflection of the nursing care given to patients. This was done by comparing what was recorded in the notes for specific areas of care with what the nursing staff said they did.
• ? The specific areas of care for patients suffering a myocardial infarction were: pain, mobility, anxiety, patient education. The specific areas of care for patients sustaining a fractured femur were: pressure areas, pain, nutrition, mobility and rehabilitation, information and teaching.
• ? Data were collected in three ways:
• – using a retrospective data abstraction tool to examine the case notes of a particular patient;
• – interviewing a nurse who had looked after the same patient;
• – interviewing a senior ward nurse to obtain information about ward policies arid practices to obtain a profile of the care usually given to these groups of patients.
• ? In this paper we present some of our findings and discuss the methodological and logistical problems of using this method.

     

The challenges of improving discharge planning in Sweden and the UK: different but the same

• ? Discharge of older people from hospital has been an area of concern for over 20 years.
• ? The present emphasis on rapid throughput of patients in acute care settings is likely to exacerbate existing problems.
• ? Improving current practice will mean addressing a number of complex issues to do with communication between agencies and professions.
• ? Despite different welfare systems, many of the challenges of discharge planning are shared in different countries.
• ? This paper describes attempts to involve patients and carers in discharge planning in Sweden and the UK and identifies a number of areas which require attention if the ideals of patient and carer empowerment are to be achieved.

     

What do elderly people do in hospital?

• ? Current health-care reforms have sharpened the focus on efficiency of bed usage; one useful method of exploring this concept is to determine how patients spend their time in hospital.
• ? This small study explored how 23 elderly patients spent their time on two elderly care wards.
• ? A time-sampling, patient-focused, structured observation method was employed to observe the patients. The most commonly observed activity was eating and drinking.
• ? The findings, in keeping with previous work, suggest that therapeutic activities occupy a minimal proportion of the patient's day.
• ? Reasons for inactivity are explored and recommendations made for further research.

     

A service evaluation of stoma care nurses' practice

• ? Stoma care nurses aim to meet the physical, psychological, social and spiritual needs of patients.
• ? Development of stoma care nursing services has varied, as it has been the responsibility of each nurse, resulting in differences in the mode of delivery.
• ? This qualitative and quantitative study involved stoma care nurses from six areas in Essex, to assess patient perception of the service they received.
• ? Overall, the satisfaction level was high despite differences in delivery of care, especially timing and frequency of visits at home.

     

Individualized nursing care: some implications

• ? This paper gives a brief account of the development of individualized nursing care, from the introduction of the nursing process to the more recent interest in primary nursing.
• ? Individualized care would appear to have been adopted as an ideal by the nursing profession, with little debate about some of the possible implications of such an approach.
• ? The paper outlines some other perspectives on patient care, and discusses the limitations of an individualistic framework which fails to acknowledge the communal and societal aspects of patient care.

     

“I need someone to keep an eye on me:” the power of attention in patient-practitioner interactions

Purpose: The purpose of this paper is to illuminate the importance of patient care and to explicate the impact of attention on my recovery from bilateral knee replacement surgery and a subsequent revision.

Method: The paper uses vignettes to illustrate attention in patient-practitioner interaction.

Results: Attention is a precursor to understanding the patient as a unique individual and the problems the patient brings to the therapy experience.

Conclusions: The capacity of practitioners to attend to their patients has an impact on patient satisfaction and recovery.

• Implications for Rehabilitation

• Attention is the precursor to establishing positive therapeutic alliances with patients.

• It is essential to attend to the patient as a person with unique experiences, perspectives, and attitudes and to modify treatment based on the person’s priorities and desires.

• Practitioners need to develop the interaction skills necessary to understand their patients as unique individuals.

     

Assessing patient satisfaction. Part 2. Findings: nursing,the hospital and patients' concerns

• ? Part 1 of this article discussed the process of evaluating patient satisfaction by means of unstructured, in-depth interviews.
• ? In this part, the content of interviews will be presented and the analytic domains derived from the research will be described.
• ? These are ‘nursing’, ‘the hospital’ and ‘patients’ concerns', and the categories which make up these domains will be discussed.

     

An international survey of patients living with spasticity

Purpose: To better understand patient perspectives on the life impact of spasticity.

Methods: Global Internet survey (April 2014–May 2015) of 281 people living with spasticity.

Results: Respondents indicated that spasticity has a broad impact on their daily-life: 72% reported impact on quality of life, 44% reported loss of independence and 44% reported depression. Most respondents (64%) were cared for by family members, of whom half had stopped working or reduced their hours. Overall, 45% reported dissatisfaction with the information provided at diagnosis; main reasons were “not enough information” (67%) and “technical terminology” (36%). Respondents had high treatment expectations; 63% expected to be free of muscle spasm, 41% to take care of themselves and 36% to return to a normal routine. However, 33% of respondents had not discussed these expectations with their physician. The most common treatments were physiotherapy (75%), botulinum neurotoxin (BoNT, 73%) and oral spasmolytics (57%). Of those treated with BoNT, 47% waited?>1 year from spasticity onset to treatment.

Conclusions: This survey emphasises the broad impact of spasticity and highlights unmet needs in the patient journey. Improvements with regards to communication and the therapeutic relationship would be especially welcomed by patients, and would help manage treatment expectations.

• Implications of Rehabilitation

• Spasticity has broad impact on the lives of patients and their families that extends beyond the direct physical disability.

• Patients with spasticity need to be well informed about their condition and treatments available and should be given the opportunity to discuss their expectations.

• Physicians need to be aware of the patient’s individual needs and expectations in order to better help them achieve their therapeutic goals.

     

Challenges and strategies for coping with scleroderma: implications for a scleroderma-specific self-management program

Abstract

Purpose: The purpose of this study was to explore challenges faced by patients with systemic sclerosis, also called scleroderma, in coping with their disease and the strategies they used to face those challenges.

Method: Five focus groups were held with scleroderma patients (4 groups, n?=?34) and health care professionals who have experience treating scleroderma (1 group, n?=?8). Participants’ discussions were recorded, transcribed and analyzed using thematic analysis.

Results: Participants reported challenges accessing information (e.g., knowledgeable specialists), dealing with negative emotions (e.g., stress due to misunderstandings with loved ones), and accessing resources (e.g., helpful products or devices). Strategies for overcoming challenges were also discussed (e.g., advocating for own needs).

Conclusion: When faced with significant challenges while coping with scleroderma, patients develop strategies to manage better and improve their quality of life. To help them cope, patients would benefit from easier access to supportive interventions, including tailored scleroderma self-management programs. Although the challenges experienced by patients with scleroderma are unique, findings from this study might help better understand patients’ perspectives regarding coping and disease management for other chronic diseases as well.

• Implications for Rehabilitation

• People living with rare diseases, including the rare autoimmune disease scleroderma, face unique challenges and often do not have access to disease-specific educational or other support resources.

• People with scleroderma report that they face challenges in accessing information, including knowledgeable healthcare providers; managing difficult social interactions and negative emotions; and accessing resources.

• Strategies employed by scleroderma patients to overcome these challenges include seeking connections to other people with scleroderma or scleroderma patient organizations, actively seeking out local resources, and learning to communicate and advocate more effectively.

• Rehabilitation professionals can support people with scleroderma by providing them with information on connecting with scleroderma patient organizations or by facilitating local patient support networks.

     

‘I’ve put diabetes completely on the shelf till the mental stuff is in place’. How patients with doctor-assessed impaired self-care perceive disease,self-care,and support from general practitioners. A qualitative study

Objective: This paper investigated patients’ experiences of disease and self-care as well as perceptions of the general practitioner’s role in supporting patients with impaired self-care ability.

Design: Qualitative interviews with 13 patients with type 2 diabetes, concurrent chronic diseases, and impaired self-care ability assessed by a general practitioner. We analyzed our data using systematic text condensation. The shifting perspectives model of chronic illness formed the theoretical background for the study.

Results: Although most patients experienced challenges in adhering to recommended self-care activities, many had developed additional, personal self-care routines that increased wellbeing. Some patients were conscious of self-care trade-offs, including patients with concurrent mental disorders who were much more attentive to their mental disorder than their somatic diseases. Patients’ perspectives on diseases could shift over time and were dominated by emotional considerations such as insisting on leading a normal life or struggling with limitations caused by disease. Most patients found support in the ongoing relationship with the same general practitioner, who was valued as a companion or appreciated as a trustworthy health informant.

Conclusion: Patient experiences of self-care may collide with what general practitioners find appropriate in a medical regimen. Health professionals should be aware of patients’ prominent and shifting considerations about the emotional aspects of disease. Patients valued the general practitioner’s role in self-care support, primarily through the long-term doctor-patient relationship. Therefore, relational continuity should be prioritized in chronic care, especially for patients with impaired self-care ability who often have a highly complex disease burden and situational context.

• Key points

• Little is known about the perspectives of disease and self-care in patients with a doctor-assessed impaired ability of self-care.

• ??Although patients knew the prescribed regimen they often prioritized self-care routines that increased well-being at the cost of medical recommendations.

• ??Shifting emotional aspects were prominent in patients’ considerations of disease and sustained GPs’ use of a patient-centred clinical method when discussing self-care.

• ??Relational continuity with general practitioners was a highly valued support and should be prioritized for patients with impaired self-care.

     

Post-surgical hormone replacement therapy: information needs of women

• ? This study examines the feelings and thoughts of women who have received hormone replacement therapy (HRT) after a surgically induced menopause.
• ? The paper outlines the patients' need for easily accessible information about HRT from professionals. Sometimes the information is not completely clear because of anxiety or misinterpretation. Women are also concerned about side-effects.
• ? Women feel that they can cope better if they understand why certain treatments are carried out, and if they have an informed choice about their method of treatment.

     

An exploratory study from the patients' perspective of living with allergies

• ? Allergic disease is one of the most prevalent chronic medical conditions in the world.
• ? Allergen avoidance has been accepted as a form of treatment for allergic disease; however, the success of treatment is often dependent on how patients choose to manage their condition.
• ? The purpose of this study was to explore how allergic conditions affect the lives of allergy sufferers and what information they believe would be useful to other allergy sufferers in the management of their allergic condition.
• ? Patients suffering from non-life-threatening allergies stated that their allergy affected many aspects of their life, such as their work, their social life, their emotional state, their physical appearance and, hence, their interactions with others. The chronic symptoms of their condition caused the greatest concern to patients. Many of these participants ‘accepted their condition’ and undertook controlling measures as part of their daily life.
• ? In contrast, patients suffering from life-threatening allergies stated that their allergy did not affect their life. Knowledge of their allergic condition was more important than acceptance.
• ? The findings elicited from allergy sufferers identified how nurses can educate patients about their condition and assist them in learning to live with their condition.

     

Client and family engagement in rehabilitation research: a framework for health care organizations

Purpose: To describe the development and implementation of an organizational framework for client and family-centered research.

Method: Case report.

Results: While patient-centered care is now well established, patient-centered research remains underdeveloped. This is particularly true at the organizational level (e.g., hospital based research institutes). In this paper we describe the development of an organizational framework for client and family centered research at Holland Bloorview Kids Rehabilitation Hospital in Toronto, Canada.

Conclusion: It is our hope that, by sharing our framework other research institutions can learn from our experience and develop their own research patient/client/family engagement programs.

• Implications for rehabilitation

• Family engagement in rehabilitation research

• ?Rehabilitation research is crucial to the development and improvement of rehabilitative care.

• ?The relevance, appropriateness, and accountability of research to patients, clients and families could be improved.

• ?Engaging clients and families as partners in all aspects of the research process is one way to address this problem.

• ?In this paper, we describe a framework for engaging clients and families in research at the organizational level.