Introduction Children with cancer experience reduced physical fitness and compromised social relationships during and following intensive treatment. This may negatively impact their quality of life. As part of the RESPECT study, we explored the motivations for participation in a physical activity programme during treatment. Methods Thirteen semi‐structured interviews were conducted with seven boys and six girls, diagnosed with paediatric cancer in 2013 and treated with chemotherapy (age 8–16 years; time from diagnosis to interview 6–16 months). Interviews were conducted in the children's homes. Results The qualitative analysis showed that children's motivations for engaging in the physical activity programme during intensive medical treatment were primarily influenced by (a) opportunity for physical activity with a classmate; (b) participation in group physical activity sessions; (c) support from significant others; and (d) improvement of physical well‐being. Main barriers included (a) poor physical well‐being; (b) compliance with medical procedures and being treated in protective isolation; and (c) limited physical activity facilities. Conclusion Despite barriers, it is possible to motivate and engage children with cancer in physical activity during intensive treatment in a paediatric oncology ward. Physical exercise and activity should be recommended and promoted from diagnosis throughout the treatment period and should include psychosocial and professional support.
Objectives: Extended hospitalization for school-aged cancer patients increases their risk of social marginalization. School-aged children mature through peer-interaction, but healthcare providers fail to incorporate this in rehabilitation efforts. The RESPECT study offers classmates to cancer patients to become ambassadors during hospital stays. This study explores classmate decision-making patterns about ambassadorship.Methods: An open-ended question was prospectively and consecutively provided to classmates (N = 221) (and parents) of 10 children diagnosed with cancer in 2014 and enrolled in the RESPECT study. Statements were analysed using thematic content analysis.Results: Of 221 classmates, 140 responded (63%). Of these, 81 applied for ambassadorship (median 8/patient), 58 declined, one was undecided. Nine forms were incomplete; leaving 131 in total that revealed 303 statements for analysis. Five major themes emerged: existing friendship (132/303 statements), personal resources (academic, emotional and social) (107/303), attitudes towards the ambassadorship (34/303), hospital environment (18/303) and logistics (12/303). Of the classmates with pre-existing friendships, 77% applied for ambassadorship and 80% with a surplus of personal resources applied. These were predominant predictors for ambassadorship application. Classmate motives were condensed into four archetypes: pre-existing friendship with a surplus of resources (100% applied), non-friend classmates with a surplus of resources (63% applied), pre-existing friendship with limited resources (22% applied) and non-friend classmates with limited resources (0% applied).Conclusion: Classmates are highly motivated to support patients during serious illness, irrespective of pre-existing friendships. Ambassadors offer a novel in-hospital approach to promote rehabilitation in children with severe/chronic diseases. Results need validation in other settings.
Background Patients newly diagnosed with inflammatory arthritis (IA) request regular consultations and support from health professionals to manage physiological, emotional, and social challenges. Evidence suggests that providing a tailored multi-component self-management program may benefit disease management. However, there is a lack of evidence of effective interventions with multiple components targeting the needs of this group. Therefore, the aim of this study was to develop a self-management intervention targeting newly diagnosed patients with IA, following the Medical Research Council (MRC) framework for developing complex interventions. Methods The development of the complex self-management intervention covered three steps. First, the evidence base was identified through literature reviews, in which we described a preliminary nurse-led intervention. Secondly, we chose Social Cognitive Theory as the underlying theory along with Acceptance and Commitment Theory to support our communication strategy. Thirdly, the preliminary intervention was discussed and further developed in workshops to ensure that the intervention was in accordance with patients’ needs and feasible in clinical practice. Results The developed intervention comprises a 9-month nurse-led intervention (four individual and two group sessions). A physiotherapist and an occupational therapist will attend the group sessions along with the nurse. All sessions should target IA-specific self-management with a particular focus on medical, role, and emotional management. Conclusion Through the workshops, we involved all levels of the organization to optimize the intervention, but also to create ownership and commitment, and to identify barriers and shortcomings of the preliminary intervention. As a result, from the existing evidence, we believe that we have identified effective mechanisms to increase self-management in people newly diagnosed with IA. Further, we believe that the involvement of various stakeholders has contributed significantly to developing a relevant and feasible intervention. The intervention is a nurse-led complex self-management intervention embedded in a multidisciplinary team (named NISMA). The intervention is currently being tested in a feasibility study.
BackgroundTo be diagnosed with inflammatory arthritis (IA) is challenging for the individual, who may experience uncertainty and anxiety [1,2]. We need more knowledge on how health professionals can support patients that have been diagnosed recently. Previous studies have focused on patients’ experience of living with IA, but few have aimed to focus on the newly diagnosed.ObjectivesThis study aimed to explore patients’ experiences, thoughts, and concerns after being diagnosed with IA.MethodsParticipants were patients newly diagnosed with IA (rheumatoid arthritis or psoriatic arthritis) recruited from a feasibility study to a self-management intervention [3].Data was collected through semi-structured interviews. The analysis was based on reflexive thematic analysis method, which provides a rich and complex understanding of patterns within data [4].ResultsTwelve adults (six men and six women, aged 25-77) diagnosed with rheumatoid arthritis (n=8) or with psoriatic arthritis (n=4) within the last three months, were interviewed at an outpatient rheumatology clinic in Denmark.We identified four main themes:1)The intrusiveness of arthritis.Symptoms affected patients physical and emotional state. The initial symptoms were experienced very differently. For some, symptoms were acute and explosive. In others, disease progression was slow, and participants became more and more invalidated with time. However, all experienced that arthritis affected their mood, and in general, patients were overwhelmed to being diagnosed with arthritis.2)Getting familiar with arthritis and its treatment. Patients requested information about how to manage IA, and several were already seeking information about non-pharmacological treatments such as different diets, meditation, and exercises. The participants paid great attention to how they responded to the pharmacological treatment and how their bodies reacted in different situations. Furthermore, the newly diagnosed also strove to become acquainted with their new body with arthritis.3)Adapting to life with arthritis. Some felt it natural to tell family members about their arthritis. In contrast, others thought it was none of their concern and did not like to bother them. The participants did not want arthritis to be an issue for other people to worry about.4)Worries about the future. Overall, the pharmacological treatment had a profound focus immediately after diagnosis. Worries about the potential lack of effect contributed to great concern and frustration. The worries were related to all aspects of life, including work and family life. However, the newly diagnosed also hoped that symptoms would be acceptable so that everyday life could be restored. Nevertheless, they also realized that they had to rethink how they wanted to prioritize in the future.ConclusionThe results of this study highlight the complexity of being newly diagnosed with IA. Time after diagnosis is dominated by worries about the benefit and harms of pharmacological treatment and the future. However, the participants did not want to perceive themselves as being sick. Instead, they strove to comfort themselves with hope for successful pharmacological treatment together with taking their own non-pharmacological initiatives.References[1]PMID: 32884244[2]PMID: 31528844[3]Lindgren LH, de Thurah A, Aadahl M, Hetland ML, Kristensen S, Esbensen BA. Newly Diagnosed with Inflammatory Arthritis (NISMA) – Development of a Complex Self-management Intervention (accepted for publication).[4]PMID: 28087505AcknowledgementsThe authors thank the participants for generously sharing their experiences and the patient research partner (SDK) for invaluable perspectives and contributions.Disclosure of InterestsNone Declared.
BackgroundDespite continuous improvements in antirheumatic pharmacological treatment, many people with inflammatory arthritis (IA) still report substantial disease impact. Based on the framework for complex interventions [1], we developed a self-management intervention (INSELMA)[2]. Based on shared decision-making, which included an initial assessment and a goal setting process a rheumatology nurse coordinated interdisciplinary support and available offers in primary care to achieve the patients’ individual goals. A feasibility test of the six-month intervention encompassed 19 patients with IA and substantial impact of the disease.ObjectivesThe objective of this study was to explore the participants’ experience of feasibility, acceptability, and potential benefit from participation in the INSELMA intervention.MethodsIndividual semi-structured interviews were conducted with participants in INSELMA. Thematic analysis was applied [3].ResultsFifteen participants were interviewed (9 women, 6 men, aged 44-75, 17-75 min.). The participants associated the benefits they experienced from the intervention to the impact IA had on their everyday lives.The analysis derived four overall themes.1)A new opportunity. Participation in INSELMA was experienced as an opportunity to improve, reduce challenges, or change issues they felt they had fought alone until now. Some expressed worries that their situation was too complex to be able to contribute to the study and some participated to contribute to scientific IA evidence.2)The importance of person-centred goals. The individual goals encompassed both physical, social, and emotional life skills. When expectations and goals were aligned, it facilitated a positive outcome. The empathic support and coaching from the nurses, who listened, motivated, and understood their problems were considered especially valuable. Time between consultations to work with goals at home was pointed out as important to experience progress.3)A little nudging means everything.Several participants expressed that the intervention had contributed with new or refreshed knowledge and motivation to change habits. Some would like continued follow-up with the nurse after the end of the study to stay committed. Also some suggested that this type of intervention should be a general offer for all patients with IA. Having access to a physiotherapist and an occupational therapist with rheumatology experience for exercise support adapted to the participants’ needs and abilities was especially important for them.4)I got more than I wished for. The intervention was experienced as feasible and meaningful, and the overall impression was positive. Several cried tears of joy and gratitude as they experienced decreased symptom load, improvement in physical strength, mobility, and sleep as well as increased energy and coping. Two had experienced no change, of which one had resumed physical activity after several years. The participants expressed hope for the future as they had new tools and habits to prevent problems and manage symptoms, which resulted in motivation to work towards new goals.ConclusionPatients found the INSELMA intervention feasible. They experienced decreased disease impact and increased activity level, facilitated by empathy and self-management support from the health professionals.References[1] DOI: 10.1136/bmj.n2061[2] DOI: dx.doi.org/10.1136/annrheumdis-2022-eular.984[3] DOI: 10.1191/1478088706qp063oaAcknowledgementsThe authors thank the participants for generously sharing their experiences.Disclosure of InterestsNone Declared.
BackgroundPeople newly diagnosed with inflammatory arthritis (IA) request regular consultations and support from health professionals (HPRs) in rheumatology to manage physiological, emotional, and social challenges. Evidence suggests that providing a tailored tailormade multi-component self-management program may benefit disease management (1). However, there is a lack of evidence in interventions with multiple components targeting people newly diagnosed with IA.ObjectivesTo develop a complex evidence- and theory-based intervention in co-creation with patients and HPRs for better self-management in newly diagnosed people with IA in a rheumatology out-patient clinic.MethodsThis study followed the Medical Research Council (MRC) Framework (2,3) for developing a complex intervention. The development phase comprised 1) identifying the evidence base, 2) identifying theory, 3) modelling process and outcomes, resulting in 4) a final description of all components and outcomes of the intervention.1) Identifying the evidence baseWe conducted two literature reviews, on which, we described a preliminary nurse-led intervention.2) Identifying theoryGiven the fact that the theory of Self-management is built upon Social Cognitive Theory (4) this was chosen as the underlying theory along with Acceptance and Commitment Theory (5) to support our communication strategy.3) Modelling process and outcomesThe preliminary intervention was discussed and further developed in seven workshops to ensure that the intervention was in accordance with patients’ needs and feasible in clinical practice. Three patients and 38 HPRs (nine therapists, 10 rheumatologists, one psychologist, one social worker, and 17 registered nurses) attended.During the workshops we identified the competencies needed in the HPRs delivering the intervention. In addition, relevant outcomes to measure self-management in a subsequent feasibility study were discussed. Discussions were digitally recorded and analysed using Thematic Analysis (6). Subsequently, the project group discussed the analysis and consensus was reached.Results4) Description of all components and outcomes of the interventionOur intervention, ready for testing in a feasibility study, was a 9-month nurse-led intervention, and consisted of four individual and two group sessions. A physiotherapist and an occupational therapist should attend the group sessions along with the nurse (Figure 1). All sessions should target inflammatory arthritis-specific self-management.Figure 1.Intervention activities andA comprehensive intervention manual has been developed. Our patient research partner and experts in rheumatology and self-management commented on the content to secure content validity. Subsequently, we conducted cognitive interviews with the HPRs to determine the face validity of the manual. In addition, we completed a two-day competence program to train HPRs in delivering the intervention.The selected patient reported outcomes were: Physical activity levels, Health assessment, Fatigue, Quality of life, Anxiety and depression, Illness intrusiveness, Illness perception, and Self-efficacy, supplemented with objective measures for diseases activity.ConclusionNISMA - a nurse-led complex self-management intervention embedded in a multidisciplinary team has been developed and described based on MRC’s framework for the development of complex interventions. The intervention is currently being tested in a feasibility study.References[1]Nikiphorou et al., Annals of the Rheumatic Diseases. 1. oct 2021.[2]Skivington et al., BMJ. 30. sep. 2021.[3]Craig et al., nt J Nurs Stud. may 2013.[4]Bandura A. SOCIAL COGNITIVE THEORY.[5]Newman et al., Lancet. oct 2004.[6]Braun et al., Springer; 2019.AcknowledgementsFirst, I would like to thank the patients and health professionals who attended the workshops.Secondly, I would like to thank The Novo Nordic Foundation for funding.Disclosure of InterestsNone declared
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