To Örebro University

BACKGROUND: Incontinence-associated dermatitis (IAD) is a prevalent and distressing form of irritant contact dermatitis caused by prolonged exposure to urine and/or faeces. Not all incontinent individuals develop IAD, suggesting that additional prognostic factors contribute to its onset. The quality of empirical evidence supporting risk factors for IAD development is moderate to very low. Therefore, it is necessary to systematically compile and analyse expert knowledge on this topic.

AIM: This study aimed to identify and prioritise key prognostic factors for IAD development through an international expert consultation.

MATERIALS AND METHODS: A cross-sectional expert survey was conducted among international experts using an electronic survey platform. Participants rated the importance of 26 pre-identified prognostic factors, ranked relevant factors and suggested additional factors. Data were analysed to determine expert consensus and factor rankings.

RESULTS: A total of 45 experts participated, with a response rate of 39 %. The highest-ranked prognostic factors included double incontinence, faecal incontinence, loose stools, stool frequency, urinary incontinence, and impaired mobility. Other important factors were advanced age, friction and shear forces, cognitive impairment, and poor nutrition. In addition, experts highlighted systemic factors such as caregiver knowledge gaps and staff shortages as potential contributors to IAD risk.

CONCLUSION: Study results support established risk factors for IAD development such as stool frequency and limited mobility. Experts also identified factors, such as higher age and the presence of loose or liquid stool, that are considered relevant by experts but are not yet fully supported by empirical evidence. Findings will inform a future large-scale cohort study.

Background: Chemotherapy, an established treatment for hematopoietic diseases. Common side-effects are nausea, infection, diarrhea, fatigue, and mucositis. Stem cell transplantation (SCT) often requires long hospitalization. Today it is common to treat patients in an outpatient care (OP care) combined with visits at the clinic.

In many countries, OP care is still an offer and not standard treatment. We aimed to investigate to what extent patients undergoing autologous SCT, received OP care or care at hospital, inpatient care (IP), and to explore patients’ subjective experiences of OP- and IP care during SCT. Investigate quality of care and strengthen OP care for patients’ sense of security and safety. Despite international experience of OP treatment at SCT, many patients are still fully cared for in hospitals. Person centered care can improve the care experience and alleviate the impact of difficulties during the transplant period.

Methods: A mini review with mixed method.

1. Quantitative, retrospective, descriptive design. A review from medical and nursing records of 88 adult patients who underwent autologous SCT in 2013-2014 and treated at a University Hospital in Sweden.

2. A quantitative questionnaire study with pre-selected response alternatives and open-ended questions. Sixtyfour patients were asked to participate in the study and chose to participate between 2017 and 2019.

3. A qualitative, pragmatic, comparative design. Data is a secondary part of a larger project (2) evaluating patient experience of safety and security in care during hematopoietic SCT regardless of inpatient or outpatient care.

Results:

1. Thirty-nine patients were cared for outside hospital at home/home-like environment (OP) and 28 were readmitted to hospital. Forty-nine were cared for at hospital. The main reason for readmission to hospital was related to nausea/vomiting, oral mucositis or stomach problems. No patients treated at OP care the entire post-transplant period (n = 11) needed total parenteral nutrition (TPN) in contrast to patients readmitted to hospital (n = 28) where 7 patients needed TPN. Seventeen patients in IP care during the entirepost- transplant period (n = 49), needed TPN.

2. Most patients, regardless of OP or IP care, felt satisfied with information given by care providers. Nearly all patients who were cared for IP and responded to the questionnaire, experienced anxiety during the care period compared with patients who were cared for in OP care, where the vast majority did not experience anxiety during care period.

3. Three themes emerged from the analysed data: subjectively perceived positive information and support; subjectively perceived negative information and support; subjective desired increased possibility of person-centered care.

Conclusions:

1. Staying at home during the transplant period led to less total parenteral nutrition.

2. Most patients indicate, as shown in other studies, satisfaction with care and information received in connection with hematopoietic SCT. Patients in IP care felt more anxiety than patients in OP care.

3. To be able to achieve optimal PCC, there was a request for developed IT support. The results can be of value when designing new functional tools to support person-centered care in the care of patients undergoing hematopoietic SCT or cared for in the hematology department.

Incontinence-associated dermatitis (IAD) is an irritant contact dermatitis from prolonged contact with urine or faeces, which can significantly impact patient comfort and quality of life. The identification of prognostic factors for the development of IAD has the potential to enhance management, support preventive measures and guide future research. The objective of this systematic review was to summarize the empirical evidence of prognostic factors for the development of IAD. This study included prospective and retrospective observational studies or clinical trials that described prognostic factors associated with IAD. There were no restrictions on setting, time, language, participants or geographical regions. Exclusion criteria included reviews, editorials, commentaries, methodological articles, letters to the editor, cross-sectional and case-control studies, and case reports. Searches were conducted from inception to April 2024 on MEDLINE, CINAHL, EMBASE and the Cochrane Library. The studies were assessed by two independent reviewers using the QUIPS and the CHARMS-PF for data extraction. A narrative synthesis approach was employed due to study heterogeneity and using the 'vote counting based on direction' method and the sign test. The overall certainty of evidence was assessed using adapted GRADE criteria. The review included 12 studies and identified 15 potential predictors. Moderate-quality evidence suggests that increased stool frequency, limited mobility and friction/shear problems are risk factors for IAD development. Female sex, older age, vasopressor use and loose/liquid stool are risk factors supported by low-quality evidence. Increased stool frequency, limited mobility and friction/shear problems seem to be risk factors for the development of IAD. There is insufficient evidence to support the predictive validity of female sex, older age, loose/liquid stool and vasopressor use. There is substantial methodological variability across studies, making it challenging to make comparisons. Large-scale cohort studies in different settings that incorporate our review findings should be conducted in the future.

OBJECTIVES: The study aimed to compare the quality of life (QoL) among cancer-bereaved parents with a control group and explore how resilience and support from healthcare professionals associated with QoL of parents 2-8 years after the loss of a child to cancer.

METHODS: This nationwide, cross-sectional survey was administered among parents (n=161) who lost their child to cancer between 2009 and 2014, compared with a matched control parent group (n=77). A study-specific questionnaire, Resilience Scale for Adults (six factors: 'Perception of self', 'Planned future', 'Social competence', 'Structured style', 'Family cohesion' and 'Social resources'), and a single-item measure of parents' QoL were included for the study.

RESULTS: There was a lower QoL in both bereaved parents (mean=5.1) compared with the control parents (mean=5.8) (p<0.001). Two resilience factors, 'Perception of self' (OR=1.8, p=0.004) and 'Planned future' (OR=2.05, p<0.001), and given sufficient information during the child's last month (OR=2.63, p=0.003) were positively associated with long-term QoL in cancer-bereaved parents.

CONCLUSION: The findings indicate lower QoL among both fathers and mothers 2-8 years after losing a child to cancer. The study also highlights the positive role of resilience and the importance of informational support on long-term QoL in cancer-bereaved parents. Bereavement support should be tailored for supporting individual needs.

INTRODUCTION: Incontinence-associated dermatitis (IAD) is irritant contact dermatitis and skin damage associated with prolonged skin contact with urine and/or faeces. Identifying prognostic factors for the development of IAD may improve management, facilitate prevention and inform future research.

METHODS AND ANALYSIS: This protocol follows the guidelines of the Preferred Reporting Items for Systematic Review and Meta-Analysis Protocols. Prospective and retrospective observational studies or clinical trials in which prognostic factors associated with the development of IAD are described are eligible. There are no restrictions on study setting, time, language, participant characteristics or geographical regions. Reviews, editorials, commentaries, methodological articles, letters to the editor, cross-sectional and case-control studies, and case reports are excluded. MEDLINE, CINAHL, EMBASE and The Cochrane Library will be searched from inception until May 2023. Two independent reviewers will independently evaluate studies. The Quality in Prognostic Studies tool will be used to assess the risk of bias, and the Checklist for Critical Appraisal and Data Extraction for Systematic Reviews of Prediction Modelling Studies-Prognostic Factors checklist will be used for data extraction of the included studies. Separate analyses will be conducted for each identified prognostic factor, with adjusted and unadjusted estimated measures analysed separately. Evidence will be summarised with a meta-analysis when possible, and narratively otherwise. The Q and I2 statistics will be calculated in order to quantify heterogeneity. The quality of the evidence obtained will be evaluated according to the Grades of Recommendation Assessment, Development and Evaluation guidance.

ETHICS AND DISSEMINATION: No ethical approval is needed since all data is already publicly accessible. The results of this work will be published in a peer-reviewed scientific journal.

Background: As early as 1997 it was stated that the outpatient model when patients are cared for in their homes (outpatient care) in connectionwith hematopoietic stemcell transplantation (hSCT), gave positive results regarding safety and effectiveness. But in the year of 2022, in manycountries, it is still an offer and not a standard treatment. Despite long international and national experience of outpatient treatment at hSCT, manypatients are still fully cared for in hospitals.

Purpose: To describe the patients’ subjective experiences of outpatient (OP)- and inpatient (IP) care during autologous hematopoietic stem celltransplantation and to ensure the quality of care outside hospital environment as a form of care in order to improve the patient's experience ofsafety and security at autologous hematopoietic stem cell transplantation at a University Hospital in Sweden. And, to evaluate physicians' andnurses’ assessment using a standardized assessment form of the patient's self-care ability when cared for outside the hospital.

Methods: A quantitative questionnaire study with pre-selected response alternatives and open-ended questions.

Results: Most patients, regardless of the form of care, OP or IP care, felt satisfied with the information given by the care provider. Nearly all ofthe patients who were cared for in hospital and who responded to the questionnaire, experienced anxiety during the care period compared withpatients who were cared for in a home environment responding to the questionnaire, where the vast majority did not experience any anxiety duringthe care period.

Conclusion: Most patients indicate, as shown in other studies, that they felt satisfied with the care and information they received in connectionwith hematopoietic stem cell transplantation but patients in IP care felt more anxiety than patients in OP care. Regarding evaluating physicians'and nurses’ assessment using a standardized assessment form of the patient's self-care ability when cared for outside the hospital, there wereno notable differences in the assessment.

Clinical relevance: A questionnaire provides the healthcare provider with a basis for developing and improving in clinical care for patientsreceiving hSCT. Regarding attention to the mental well-being equated with the physical well-being it is a clinical task for healthcare providers. Awell-developed basis for assessing the patient's level of care can ensure the best care.

The aim of this nationwide survey was to explore, based on an open-ended question, cancer-bereaved siblings’ advice to peers with a brother or sister with cancer. Half of the advice related to being with the ill sibling and cherishing the time together. Other advice related to the value of communicating about the situation, letting go of guilt, and living life as usual. The results highlight the importance of health care professionals, family, and others facilitating for siblings to spend time together and communicate openly.

Introduction: Grief among bereaved parents is known to cause psychological distress and physical illness, but knowledge concerning factors that can contribute to health promotion after bereavement is scarce. Childhood cancer remains the most common non-accidental cause of death among children in Norway. The aim of the present study was to explore if resilience factors among cancer-bereaved parents could predict whether they will be able to come to terms with their grief 2-8 years following the loss.

Methods: A Norwegian cross-sectional national survey was conducted among 161 cancer-bereaved parents using a study-specific questionnaire. Logistic regression was used to explore whether resilience factors predicted parents' grief outcome 2-8 years after their loss.

Results: On the Resilience Scale for Adults (RSA), three of the resilience factors contributed significantly in predicting whether the parents in the present study would come to terms with their grief 2-8 years after the loss their child: "Perception of self "(OR 2.08, p = .048), "Social resources" (OR 2.83, p = .008) and "Family cohesion" (OR .41, p = .025). The results showed a negative relationship between time since loss (2-6 years) and whether the parents answered that they had come to terms with their grief (p = < .05). The loss of a parent (OR .30, p = .030) combined with the loss of their child had a negative and significant effect on whether they indicated that they had processed their grief.

Conclusion: The total score of RSA and three of the six resilient factors contributed significantly in predicting whether cancer-bereaved parents in the present study indicated that they had come to terms with their grief to a great extent. The present study supports hypotheses that regard resilience as an important contribution in predicting healthy outcomes in people exposed to adverse life events.

Objective: Many bereaved siblings have still not come to terms with their grief many years after the loss, but few studies have focused on what can help. The aims of this study were to identify cancer-bereaved adolescents' and young adults' ways of coping with grief after loss of a sibling, and examine whether these ways of coping were related to their experience of having worked through their grief.

Method: This nationwide survey of 174 cancer-bereaved siblings (73% participation rate) is based on one open-ended question about coping with grief ("What has helped you to cope with your grief after your sibling's death?") and one closed-ended question about siblings' long-term grief ("Do you think you have worked through your grief over your sibling's death?"). The open-ended question was analyzed with content analysis; descriptive statistics and Fisher's exact test were used to examine the relation between type of coping and siblings' long-term grief.

Result: The siblings described four ways of coping: (1) thinking of their dead brother/sister and feeling and expressing their grief; (2) distracting or occupying themselves; (3) engaging in spiritual and religious beliefs/activities; and (4) waiting for time to pass. One of these categories of coping with grief, namely, engaging in spiritual and religious beliefs and activities, was associated with siblings' experience of having worked through their grief two to nine years after the loss (p = 0.016).

Significance of results: Those siblings who had used spirituality, religious beliefs, and activities to cope were more likely to have worked through their grief than those who had not.

Objective: Our aim was to explore bereaved siblings' positive and negative memories and experiences of their brother's or sister's illness and death.

Method: In our nationwide Swedish study, 174 of 240 (73%) bereaved siblings participated, and 70% responded to two open-ended statements, which focused on siblings' positive and negative memories and experiences of illness and death. The data were analyzed using systematic text condensation.

Results: The bereaved siblings' responses were categorized into four different themes: (1) endurance versus vulnerability, (2) family cohesion versus family conflicts, (3) growth versus stagnation, and (4) professional support versus lack of professional support. The first theme expressed endurance as the influence that the ill siblings' strong willpower, good mood, and stamina in their difficult situation had on healthy siblings, whereas vulnerability was expressed as the feeling of emptiness and loneliness involved with having an ill and dying sibling. In the second theme, family cohesion was expressed as the bonds being strengthened between family members, whereas family conflicts often led siblings to feel invisible and unacknowledged. In the third theme, most siblings expressed the feeling that they grew as individuals in the process of their brother's or sister's illness and death, whereas others experienced stagnation because of the physical and mental distress they bore throughout this time, often feeling forgotten. In the last theme-professional support-most siblings perceived physicians and staff at the hospital as being warm, kind, and honest, while some siblings had negative experiences.

Significance of results: The study shows that bereaved siblings can have positive memories and experiences. The significance of the positive buffering effect on bereaved siblings' own endurance, personal growth, family cohesion, and social support should be noted. This knowledge can be valuable in showing healthcare professionals the importance of supporting the siblings of children with cancer throughout the cancer trajectory and afterwards into bereavement.