Factors and health-related quality of life associated with participation in a post-ICU follow-up. A register study.

BACKGROUND: Follow-up for heterogeneous intensive care patients presents challenges for rehabilitation interventions and outcome measurements. The aim was to describe and explore characteristics and determinants for visiting/not visiting a nurse-led clinic (NLC) at different time-points, and to describe physical and mental health (HRQoL) over time. METHODS: Patients with a length of stay (LOS) of ≥72 hours, discharged from a general intensive care unit 2004-2014, who participated in a 6-month follow-up programme offering visits to NLC at 2 and 6 months were included. The register study includes information regarding patients' participation in NLC, clinical and demographic data from the Patient Administrative System within Intensive care, and data on 2-, 6- and 12-month HRQoL by using SF-36 from the Swedish Intensive Care Registry. RESULTS: Of 656 patients, 57% visited the NLC on some occasion. These patients were younger (P = .000), had lower Simplified Acute Physiology scores (P = .001) and higher SF-36 physical health domain scores at 2 months (P < .05) compared to those not visiting at all. Visitors at 2 months only were younger, had shorter LOS and higher physical and mental domain scores than patients visiting at 6 months only. Patients visiting the NLC scored significantly higher in all domains from 2 to 12 months, whereas non-visiting-patients' did this in four out of eight domains during the same time frame. CONCLUSION: Individual patient's characteristics and current health conditions seem to influence visits to NLC or not. The findings may contribute to the development of existing routines to match the diversity of patients' needs and life situations.

Experiences of cancer rehabilitation: A cross-sectional study.

AIMS AND OBJECTIVES: To investigate the cancer rehabilitation experiences of working-age cancer survivors. BACKGROUND: Cancer survivors have extremely complex needs, spanning physical, vocational and sexual domains. Although cancer rehabilitation services have been found to eliminate or reduce these strains, these services are often underutilised. DESIGN: A cross-sectional study design was employed. METHODS: A survey of persons over the age of 18 with a cancer diagnosis, enrolled in the Social Insurance Agency in a municipality in southern Sweden (n = 168, 68% women), was conducted. RESULTS: Patients who used the cancer rehabilitation service (57%) were generally satisfied with it. Of participants, 26% reported not having received an offer of rehabilitation. Of those who reported that they received information about cancer rehabilitation services, most also reported that they received this information from a healthcare service professional (69%); for example, from the oncology nurse or the oncologist, whereas 20% claimed they received the information from the administrator of the Swedish Social Insurance Agency. A minority of children and family members of patients received support from the healthcare system. CONCLUSIONS: More efforts should be taken to reach patients in need of cancer rehabilitation. Additionally, more attention should be directed towards family members and young children. RELEVANCE TO CLINICAL PRACTICE: More than one in four patients claimed to not have received an offer of cancer rehabilitation, and an even greater number of patients claimed that their spouses and children had never received an offer for this service either. Hence, there is a communication barrier that needs to be overcome. Health providers should be aware that information needs to be repeated several times, and presented both orally and in writing.

Daily life and life quality 3 years following prostate cancer treatment.

BACKGROUND: Knowledge of experiences from prostate cancer is sparse in a longitudinal perspective. From a nursing perspective, results from combined qualitative and quantitative studies are lacking however would present the broadest knowledge base for best practice. Present descriptions of medical-physical symptoms such as urinary, bowel and sexual dysfunction from quantitative inquiries need be complemented with qualitative results. Such knowledge is essential in relation to treatment and communication with patients over the years and not only shortly after surgery. METHODS: A longitudinal study was formatted to investigate general and specific health quality and sense of coherence quantitative alterations over three years. A general health quality module (EORTC QLC-C30) and a disease-specific module (EORTC PR-25) were applied for the longitudinal study together with the Orientation to life questionnaire (SOC), measuring a persons' sense of coherence. In order to strengthen reliability and compensate for low participation we used the Directed content analysis for interviewing and analysis. The method allows using findings from earlier research when interviewing along with detecting new areas. Twenty-one men were followed over three years and six of them, in the third year, accepted to be interviewed. RESULTS: We found high quality of life ratings and extended the study with follow-up interviews in year three, to investigate whether questionnaire results were in line with interview findings. We found high life quality and functioning ratings that were in line with qualitative descriptions. Interview analysis showed retrieval of life as lived before, yet in a different way, the men never forgot the diagnosis event, had a unique illness history worth hearing, and had come to terms with most treatment-related shortcomings. Sense of coherence ratings were medium to high and confirmed stability over time in comprehensibility, manageability and meaningfulness after prostate cancer treatment. CONCLUSIONS: Over the years, the men's negative experiences from shifted into 'a good life' though in a different way than before. The interpretation is supported in the study by quantitative results showing a high degree of functioning. The men's sense of coherence seamed to support their handling of life three years after prostate cancer treatment.

Quality from the patient's perspective: a one-year trial.

PURPOSE: This article aims to shows how changing information routines might influence service quality perceptions. A secondary aim was to test an instrument's everyday feasibility for healthcare quality assessment. DESIGN/METHODOLOGY/APPROACH: Patients often show high-grade satisfaction with general care although they display dissatisfaction with some information they receive. A questionnaire survey was used to establish patient satisfaction after introducing standardised guidelines for nursing performance and information provision. Patient satisfaction was assessed using "quality from the patient's perspective" (QPP) questionnaire. Patients from gynaecological and haematological wards (n = 71) (the study group) and a comparison group (n = 67) were surveyed. Patients were given the questionnaire when their diagnosis was confirmed, after six months and 12 months. Data were collected over 36 months. FINDINGS: The study group showed an increased satisfaction with information from nurses (p = 0.001) but not physicians. However, patients tended to put greater emphasis on socio-cultural issues than information and cooperation seemed to represent high quality from the patient's perspective. RESEARCH LIMITATIONS/IMPLICATIONS: Successively lower response rate, mainly owing to cancer patients' deteriorating medical conditions. The study verifies the concordance model's relative merits. PRACTICAL IMPLICATIONS: The study verifies that care's softer side appears to be more important to patients than information improvements. ORIGINALITY/VALUE: Results confirm that patients' satisfaction with information had implications for overall quality; but social issues seemed more important and enhancing quality is best achieved through participation and cooperation.

Individual personal relations: effects on service quality.

PURPOSE: The purpose of this paper is to study patients' attitudes to nurses and investigate what hampering factors occur in the actual nursing situation and what patient features might affect cooperative climates. DESIGN/METHODOLOGY/APPROACH: In-depth interviews were conducted with 11 male inpatients suffering prostate cancer. The interviews were personal narrations based on open-ended questions. The theoretical basis is founded in sense-making, trust and competence. FINDINGS: Existential issues related to nursing care were interpreted by nurses as a need for (technical) information. However, respondents indicated a need for professional support regarding their whole life. The social climate seems not to be optimal for existential talk owing to hospital routines. Patients' personal traits also affect the propensity to cooperation, and three types were distinguished: cooperating patients; passive patients; and denying patients. Nurses' competence may be regarded as hierarchical levels from optimising single items, over system optimisation and to optimisation from the patient perspective. The study indicates that not even first-level requirements are met. RESEARCH LIMITATIONS/IMPLICATIONS: Only patients' views were studied. Nurses' perceptions would add additional insights. Lack of personal relations and cooperation between patient and nurse may decrease service quality. Patient attitudes seem to be a major obstacle. For some patients, passively receiving technical information may be an excuse for not wanting to participate in mutual sense-making. The supposed need for technical information may also be an excuse for nurses to avoid more sensitive issues. ORIGINALITY/VALUE: Better quality of care involves changing patient perceptions and attitudes to what constitutes nursing competence.

A cross-sectional study of distress: A cancer response.

Aim: To describe the experience of distress in people with cancer of working age. Design: A cross-sectional study. Methods: In this cross-sectional study, patients (N = 168) with both ongoing (N = 56) and completed treatment (N = 105) completed the Distress Thermometer and the detailed problem list. Data were analysed by descriptive and analytical statistics. Results: A large proportion of patients (29%) continued to experience high distress (>3 according to the Distress Thermometer) even after treatment was completed. Patients experienced several problems after treatment had ended such as fatigue (44%), sleep problems (34%), worries (31%), pain (31%), tingling in hands and feet (31%) and problems with memory/concentration (30%). Patients with financial/insurance problems had significantly higher distress than those who did not have these problems.

Prescribed physical activity maintenance following exercise based cardiac rehabilitation: factors predicting low physical activity.

BACKGROUND: Physical activity is important to reduce mortality, morbidity and risk factors in patients with coronary heart disease. This report evaluates to what extent patients are still physically active following an exercise-based cardiac rehabilitation programme 12-14 months post-myocardial infarction and factors predicting why not. METHODS: Data from the National Quality Registry Swedeheart with post-myocardial infarction patients ( n=368) admitted from July 2012 to November 2014 were collected with outcomes of physical activity after 12-14 months. Baseline data included demographics, clinical variables, participation in exercise programmes, prescribed physical activity, health-related quality of life and self-reported health (EQ-5D-3L/EQ-VAS). A direct binary logistic regression analysis was used to identify indicators of low physical activity. RESULTS: Physical activity frequency per week (PA/week) was low, i.e. zero to three times, in older patients over 64 years ( P=0.00) and in those having problems with pain/discomfort (138 PA/week vs. 195) ( P=0.01), problems with mobility (60 PA/week vs.273) ( P=0.04) and anxiety/depression (128 PA/week vs. 205) ( P=0.04). CONCLUSION: Indicators predicting low physical activity can be used targeting improved post-myocardial infarction care outlining person-centred rehabilitation programmes and specialist nursing-led programmes.

Keeping the child in focus while supporting the family: Swedish child healthcare nurses experiences of encountering families where child maltreatment is present or suspected.

Child maltreatment can lead to acute and long-term consequences, and it is important that at-risk children are identified early. Child healthcare (CHC) nurses in Sweden are in a position to identify child maltreatment, as they follow children and their parents from the child's birth to school age. Therefore, the aim was to describe CHC nurses' experiences when encountering families in which child maltreatment was identified or suspected. Individual open interviews with eight CHC nurses were performed and analysed using a qualitative content analysis. Findings revealed that keeping the child in focus, while supporting the family was essential for the nurses. This family-centred approach was assumed to benefit the child's interests. Meeting families where child maltreatment was identified or suspected influenced the nurses, emotionally in different ways. Nevertheless, it was important to keep an open mind and communication build on honesty. Furthermore, the nurses requested professional supervision in order to help them learn from the situation ahead of the next time. This knowledge about CHC nurses' experiences may form a basis for the development of interventions that aim to support the CHC nurses in their professional role, and thereby improve support to children and parents in the future.

Micturition problems in relation to quality of life in men with prostate cancer or benign prostatic hyperplasia: comparison with men from the general population.

The aim of the study was to investigate men with prostate cancer and benign prostatic hyperplasia (BPH) in comparison with men from the general population in aspects of presence and frequency of micturition problems in remembrance of prior to treatment and currently. Further, the aim was to investigate the impact of micturition problems on quality of life and the association with micturition problems, and quality of life and sense of coherence (SOC). The samples consisted of 155 men with prostate cancer, 131 with BPH, and 129 from the general population. Micturition problems were assessed with study-specific questions, modified International Prostate Symptom Score (IPSS), quality of life questionnare (QLQ C-30), and SOC questionnaires. Parametric and nonparametric statistics were applied. Most troublesome urinary problems were leakage, feelings of discomfort, and disrupted urinary function and frequency. Men with urological diagnosis had more micturition problems, fatigue, and sleeping difficulties than men from the general population, but the cancer diagnosis did not add to the problems. Role and social functioning (prostate cancer), emotional functioning (BPH), and grade of fatigue (general population) showed itself vital for overall quality of life. Thus, help in solving issues of micturition problems, fatigue, and sleeping disturbances may contribute to maintenance of role, social, and emotional aspects of life.

Patient Reported Outcome Measure (PROM) of Quality of Life After Prostatectomy - Results from a 5-Year Study.

Prostate cancer is the most common cancer among men in Sweden, and treatment is negatively affecting the patients' quality of life. Even so, long term experiences are sparse and implications for nursing practice are little known. The aim of this study was to determine areas of functioning and factors impacting quality of life, QOL, during and five years after radical prostatectomy (RP) using a quality of life questionnaire and a specific module for prostate cancer. A longitudinal study was performed with consecutively included Swedish men from baseline and after RP treatment (n=222) from 2003 to 2011 to obtain their opinions on quality of life. Data was gathered through a mail out - mail in procedure at baseline, 3 months, 1-3 and 5 years after treatment with a response rate of 94.14% - 75.2%. One reminder was sent on each occasion. Identified areas with increased functioning after five years were emotional and social functioning. QOL ratings did not change over the years. Sexual activity and functioning decreased and hormonal treatment-related symptoms increased. Impact on QOL was found regarding emotional and social functioning, nausea/vomiting, pain and hormone-related symptoms. Increasing age, living with a partner and educational level had no significant impact on QOL. Implications for nursing are to initially focus on physical problems and at times for follow-up visits pay attention also to emotional and social aspects of life. To be able to make a difference in the patient's life, nurses need to bridge the gap between in-hospital treatment and everyday life outside hospital.

Indwelling catheter treatment and health-related quality of life in men with prostate cancer in comparison with men with benign prostatic hyperplasia.

Experiences from indwelling urinary catheter treatment periods were studied. Little is known of what is felt from a male perspective although catheter treatment is a common pre- and postoperative measure for men with prostate cancer and benign prostatic hyperplasia (BPH). Also studied were health-related quality of life (HRQOL) and sense of coherence (SOC). Men with catheter experience (prostate cancer n = 71, BPH n = 37) were selected from a larger questionnaire study. Assessment was made with study-specific questions together with the QLQ C-30 assessing HRQOL and the SOC questionnaire measuring sense of coherence. Data reduction method was applied to study specific variables to determine problem patterns. Correlation between HRQOL and SOC was determined. Results showed similar problem patterns in men with prostate cancer and BPH: discomfort in wearing catheter (e.g. uneasiness 48.2%), practical and psychosocial difficulties in handling and wearing catheter (e.g. attaching catheter 32.4%) and discomfort at installation (e.g. pain 29.7%). There was lack of knowledge about wearing and practical handling of the catheter. Having a cancer diagnosis did not add to uneasiness or practical problems. Life quality was correlated to SOC (p

Swedish men's experiences of becoming fathers to their preterm infants.

PURPOSE: To describe Swedish men's experiences of becoming fathers to their preterm infants. DESIGN: A cross-sectional descriptive study. SAMPLE AND METHOD: Eight men participated in semistructured interviews with open-ended questions. The interviews were analyzed using manifest and latent content analysis. MAIN OUTCOME VARIABLES: The concepts of control and noncontrol. RESULT: The manifest analysis of the interview text produced six categories: concern, stress, helplessness, security, support, and happiness. The latent content interpretation indicated that the concepts of control and noncontrol were relevant to the fathers' experiences. The men's experiences of early fatherhood were influenced by their ability to experience control. When concern, stress, and helplessness dominated the fathers' experiences and coincided with low levels of happiness, support, and security, they experienced noncontrol. Conversely, when they experienced support, security, and happiness, they felt that they were in control and able to handle the situation.