[Specific therapy needs of young adults with chronic pain : Results of a qualitative interview study]. / Spezifische Therapiebedürfnisse junger Erwachsener mit chronischen Schmerzen : Ergebnisse einer qualitativen Interviewstudie.

BACKGROUND: Young adults find themselves in an unstable phase of life with relationship breaks, falling structures and great challenges in life. Chronic pain makes it difficult to cope with this stage of life due to functional, emotional and social limitations. For this age group there are hardly any target group-specific treatment programs. OBJECTIVE: The aim of the study was to find out what needs the patient group of young adults with chronic pain have with regard to inpatient pain therapy and what need is indicated for a separate therapy concept for this age group. MATERIAL AND METHODS: Within the framework of a qualitative research approach, specific needs of young adults with regard to inpatient pain therapy were surveyed via guideline-based interviews. A total of 66 interviews were conducted with patients and practitioners. The evaluation was carried out using the method of structuring qualitative content analysis. RESULTS: Five main categories regarding the specific treatment needs of young adult pain patients were identified: respect, belonging, special circumstances, locating the pain and specific elements of therapy. CONCLUSION: Special living conditions and a respectful treatment attitude are of particular importance. A greater number of activation offers, a higher proportion of life counseling and perspective-creating aspects as well as psychotherapeutic offers are a necessity for an efficient therapy. Acceptance and commitment therapy techniques and the positive benefits of peer groups can expand the treatment approach for young adults. Young adults could benefit from a target group-specific and needs-adapted care structure.

Multidrug-resistant organisms in paediatric palliative care patients - Prevalence, risk factors and the impact of a liberal hygiene concept.

AIM: Multidrug-resistant organisms (MDRO) deserve special attention in health-care facilities for children with life-limiting conditions because these children have an increased risk for colonisation. To avoid nosocomial transmissions to other inpatients, single-room isolation is usually recommended. In the context of paediatric palliative care (PPC), such isolation counters the aim of participation in social activities for the patients. This study aimed to determine the prevalence of MDRO, the predictive value of risk factors and the incidence of nosocomial infections and nosocomial colonisations on a PPC inpatient unit applying a special hygiene concept that enables participation in social activities through risk-adaption and barrier nursing. METHODS: Two-year surveillance with MDRO screening of all intakes (N = 386) of a PPC unit on the day of admission and discharge. To determine the predictive value of pre-defined risk factors, logistic regression analyses were calculated. Receiver operating characteristic analyses were performed to determine the predictive power of the number of risk factors on the presence of MDRO. RESULTS: The rate of MDRO colonisation at admission was 12.7%; previous positive MDRO screening was the only significant individual risk factor. Over the 2-year period, no MDRO-related nosocomial infections occurred; nosocomial colonisation incidence density was 0.6. CONCLUSION: Results demonstrate that patients with at least one risk factor have to be cared for by barrier nursing until MDRO screening results are negative. Following these guidelines prevents nosocomial MDRO transmission.

Addressing multidrug resistant pathogens in pediatric palliative care patients-the nurses point of view: A qualitative study.

BACKGROUND: Multidrug resistant pathogens are a large-scale healthcare issue. In particular, children with life-limiting conditions have a significantly increased risk of multidrug resistant pathogen colonization. Official hygiene requirements recommend children, who are colonized with multidrug resistant pathogens, to be isolated. In the context of pediatric palliative care, such isolation adversely affects the aim of social participation. To overcome this challenge of conflicting interests on a pediatric palliative care inpatient unit, a hygiene concept for patients colonized with multidrug resistant pathogens, called PALLINI, was implemented. AIM: The aim of this study was to identify the nurses' attitudes and opinions toward PALLINI. METHODS: Nurses (N = 14) from the pediatric palliative care unit were queried in guideline-oriented interviews. Interviews were analyzed qualitatively by means of content analysis. RESULTS: The following four categories were identified: (1) safety, (2) effort, (3) quality of care, and (4) participation. All categories demonstrated ambivalence by nursing staff regarding PALLINI. Ambivalence arose from guaranteeing infection control versus noncompliance by the families, additional workload for patients with multidrug resistant pathogens versus lack of resources, impaired relationship with the parents versus enabling better care for the child, as well as enabling some limited contact versus the larger goal of genuine social participation. Despite this, nurses reported the importance of arranging everyday-life for the patients so that they experience as much social participation as possible. CONCLUSION: The implementation of a new hygiene concept is challenging. Despite positive reception of PALLINI from the nurses, ambivalence remained. Addressing these ambivalences may be critical to best implement the new hygiene concept.

Core outcome domains of pediatric palliative care for children with severe neurological impairment and their families: A qualitative interview study.

BACKGROUND: The interest in outcome measurement in pediatric palliative care is rising. To date, the majority of studies investigating relevant outcomes of pediatric palliative care focus on children with cancer. Insight is lacking, however, about relevant outcome domains for children with severe neurological impairment and their families. AIM: The aim of this study was to identify meaningful outcome domains of pediatric palliative care for children with severe neurological impairment and their families. DESIGN: A qualitative research design following a constructivist research paradigm was employed. Guided interviews were conducted with parents of children with life-limiting conditions and severe neurological impairment and professional caregivers. The data were analyzed using qualitative content analysis. SETTING: Overall, 10 cooperating pediatric palliative care institutions across Germany (outpatient and inpatient settings) aided in the recruitment of eligible parents and professional caregivers. A total of 11 interviews with 14 parents and 17 interviews with 20 professional caregivers were conducted. RESULTS: Six core outcome domains of pediatric palliative care for children with severe neurological impairment and their families were identified, namely (1) symptom control, (2) respite and support, (3) normalcy, (4) security, (5) empowerment, and (6) coping with the disease, each consisting of 1 to 13 individual aspects. CONCLUSION: As for other diagnostic groups, symptom control is a relevant outcome domain for children with severe neurological impairment. However, other outcome domains which focus on the whole family and take into account the long disease trajectory, such as respite and support, security, empowerment, and coping with the disease, are also crucial.

[Dressing material in children with epidermolysis bullosa : A qualitative study on experiences of parents and affected children]. / Verbandsmaterial bei Kindern mit Epidermolysis bullosa : Eine qualitative Studie zu den Erfahrungen von Eltern und betroffenen Kindern.

BACKGROUND: Epidermolysis bullosa (EB) is a rare genetic disease that soon becomes apparent after a child's birth. Mechanical stress in particular causes painful skin-blistering that potentially leads to numerous complications. Dressing materials fulfill important functions for children with EB: they help protect the skin, but create problems at the same time. OBJECTIVE: The study focuses on the experiences with dressing materials among parents and affected children. The exploration of individual experiences and the presentation of successful strategies to deal with problems is intended to contribute to a better understanding of the advantages and disadvantages of different dressing materials. MATERIALS AND METHOD: Following a qualitative research approach, eight semi-structured interviews were conducted with N = 13 persons. For analysis, a structured qualitative content analysis with an inductive/deductive approach for setting up the final categories was chosen. RESULTS: The use of dressing materials in the context of a dressing change is a key issue for parents and affected children. Five main categories were identified: the child's individuality; problems of use; the adjustment process; parents' expertise; organization of materials. In a continuous process, parents acquire specific knowledge and skills that enable a good fit between the dressing materials and their child and contribute to their own handling confidence. CONCLUSION: With their action-oriented expertise, parents can avoid additional skin damage caused during dressing changes. Here, the focus is on technical skills that lead to more comfort for the affected child and help parents to meet the challenge of dressing changes. Regarding the child's development, parents are continually confronted with new challenges and must adapt their old, or develop new, strategies.

[Living with bandages: a mixed-methods-study on the view of families of children with epidermolysis bullosa]. / Mit Verbänden leben: Eine Mixed-Methods-Studie zur Sicht der Familien von Kindern mit Epidermolysis bullosa.

Living with bandages: a mixed-methods-study on the view of families of children with epidermolysis bullosa Abstract. Background: Children with epidermolysis bullosa (EB) often need new bandages regularly due to sore skin and blistering. Aim: The question about the experiences of parents and children affected by EB with dressing materials is intended to identify starting points for effective support of families. Methods: In the first part of the sequential mixed-methods study, guideline-based interviews were conducted and evaluated with qualitative content analysis. Based on the results, a questionnaire was developed and implemented as an online survey. After analysis with descriptive statistics, these results were combined with the qualitative results. Results: In the "Find out what works" process, the cutting of the materials and the importance of flexibility come to the fore. The parents' confidence in their actions is particularly evident in the application of the bandages and in their knowledge of the materials. The removal of glued dressings is often associated with pain. Dirty bandages are the most common problem in everyday life. Both aspects relate to the wearability of the bandages. When bandages are integrated into everyday family life, the most important role is played by cost absorption and expertise in the organisation. Conclusions: Parents develop specific competences on EB, on their child and dressings. With counselling and education, nursing takes a central function within the multi-professional accompanying interventions to support and relieve families.

Exploring the Mechanisms Underlying the Effectiveness of Psychosocial Aftercare in Pediatric Chronic Pain Treatment: A Qualitative Approach.

A newly developed specialized psychosocial aftercare program (PAC) for pediatric patients with chronic pain following an intensive interdisciplinary pain treatment (IIPT) was found to be significantly more effective than IIPT alone. This qualitative study aimed to gain further insight into the mechanisms and prerequisites for the effectiveness of this specialized aftercare program. We conducted structured telephone interviews with patients, parents, and health care professionals conducting PAC. A total of 16 interviews were conducted-seven interviews with parents, six interviews with patients, and three interviews with health care professionals-and transcribed verbatim. Data were analyzed using reflexive thematic analysis. Four major themes consisting of 20 subcategories were identified, namely (1) frame conditions, (2) person factors, (3) stabilization and (4) catalyst. The foundations of treatment success are frame conditions, such as flexibility or constancy, and person factors, such as respect or expertise. Based on these foundations, stabilization is achieved through security, mediation, orientation and support. Altogether, these components of PAC reveal their potential as catalysts for further improvement even after discharge from IIPT. Overall, patients and their families emphasized widespread personal relevance and acceptance of the PAC program. The findings of this study may be employed in the development of other aftercare programs or interventions involving families in the context of psychotherapeutic and psychosocial health care.

The effect of multidrug-resistant organisms on social participation and quality of life in children with life-limiting conditions.

BACKGROUND: Children with life-limiting conditions have a high risk of colonisation with a multidrug-resistant organism (MDRO). To avoid the spread of hospital-aquired infections to other patients, children with a MDRO are moved to an isolated room or ward. However, such isolation prevents social participation, which may reduce the child's quality of life (QoL). To overcome this challenge of conflicting interests on a paediatric palliative care inpatient unit, a hygiene concept for patients colonised with MDRO, called PALLINI, was implemented. PALLINI advises that, instead of isolating the affected children, strict barrier nursing should be used. AIM: To identify the impact of a complex hygiene concept on children's and parents' QoL and social participation. METHODS: Cross-sectional mixed-methods research approach, comprising semi-structured interviews with parents and staff members, and a QoL-questionnaire focusing on the child which was completed by parents. FINDINGS: In paediatric patients with life-limiting conditions who have MDRO colonisation, using a complex hygiene protocol resulted in both benefits and barriers to social participation. However, the child's QoL did not appear to be affected. CONCLUSION: All staff members and families have to be familiar with the hygiene concept and the concept has to be self-explanatory and easy to apply.