Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Grønning, Kjersti; Bratås, Ola; Steinsbekk, Aslak

doi:10.14710/nmjn.v7i1.15123

Cited by 6 publications

(5 citation statements)

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“…The life situation of this group of patients is unpredictable (Toye et al, 2019). The patients must have access to nurses for need-based education throughout the disease trajectory (Bech et al, 2020) since managing a life with chronic inflammatory arthritis is challenging even though the patients have participated in patient education (Grønning et al, 2016(Grønning et al, , 2017. The continual need for knowledge may be a reason for the active engagement among patients that seek information on their own (Connelly et al, 2018;des Bordes et al, 2018;Sierakowska et al, 2016).…”

Section: Discussionmentioning

confidence: 99%

“…Nurses are trained to recognize what is important and necessary for patients in different situations, and act with and on behalf of their patients (Henry, 2018). Recognising what patients with chronic inflammatory arthritis need to learn when living with a chronic disease (Grønning et al, 2017), is necessary to provide patients with person-centred care (McCormack B, 2015;McCormack & McCance, 2016). Person-centred care in the field of rheumatology (Bala et al, 2018), includes activities involving the patient in making decisions about what kind of information, education or support the patient need at different times in the disease course.…”

Section: Introductionmentioning

confidence: 99%

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A longitudinal study of educational needs among patients with inflammatory arthritis

Grønning

Lim

Bratås

2021

Musculoskeletal Care

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Introduction: Patient education is important in the follow-up and disease management for patients with chronic inflammatory arthritis. Patients' needs for education and information varies, and it is important that the education is tailored to the individual patient. Hence, the aim of this study is to investigate whether patients' educational needs change over time, and which demographic, disease-related or self-management characteristics that are associated with patients' educational needs. Methods:The Mann-Whitney U-test was used to study patients' longitudinal educational needs and whether their needs change over time, while multivariable linear regression analyses were used to investigate associations between patients' educational needs and demographic variables, disease-related and self-management characteristics.Results: There were no changes in patients' educational needs in the domains of managing pain, movement, feelings, arthritis process and treatment from health professionals during the study period of seven years. A small decrease in educational needs in the domains self-help measures (p-value 0.047) and support from others (p-value 0.010) was detected. The regression analyses showed that higher educational needs were associated with being female, lower educational level, shorter disease duration, and a lower level of patient activation. Conclusions: Patients with chronic inflammatory arthritis have continual needs for patient education throughout their disease trajectory. Nurses and health care professionals must therefore ask their patients what kind of education they need at every follow-up throughout the disease course.

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Section: Discussionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

A longitudinal study of educational needs among patients with inflammatory arthritis

Grønning

Lim

Bratås

2021

Musculoskeletal Care

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“…Patient activation leads to an improvement of self-management; it is also associated with disease prevention, increased interest toward seeking health information and results in better quality of life, greater satisfaction with care, improved adherence to treatment, better knowledge, enhanced health status, and lower use of health services [48]. Studies confirm that nurse-led patient education provides opportunities and perspectives for a better life [49] as a prerequisite for maintaining a good quality of life.…”

Section: Maintaining the Quality Of Life Of Patients With Ciamentioning

confidence: 99%

Perspective chapter: NURSE-LED EDUCATION FOR PATIENTS WITH CHRONIC INFLAMMATORY ARTHRITIS

Stoilova

2024

Nursing Studies - A Path to Success

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As an integral part of disease monitoring and management of patients with chronic inflammatory arthritis, patient education is highly recommended to help patients optimize their health and well-being rather than be limited to the disease. Rheumatology nurses have been shown to play a major role in patient education, thus enabling them to increase their knowledge about their health condition as well as change their health behavior. Since patients with chronic inflammatory arthritis have different educational needs, patient education can be provided in a variety of ways tailored to the specific and unique needs of each patient. The extent to which nurses in various regions of the world are involved in patient education depends on both their professional background and the organization of the relevant health system.

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“…Chapter 6 Acceptability of intervention: parent and children and young people qualitative studies T he value of qualitative research nested within clinical trials is increasingly acknowledged, 138,139 especially when it pertains to complex health-related matters. 140 Rather than being seen as a mere appendage to the main trial, it is often used to explicate a deeper understanding of the perceptions of those delivering and receiving a treatment. In this respect, qualitative research not only forms a crucial part of the trial's evaluation, but also assists in determining the meaning behind the quantitative findings.…”

Section: Resource Utilisationmentioning

confidence: 99%

An intervention to improve the quality of life in children of parents with serious mental illness: the Young SMILES feasibility RCT

Abel

Bee

Gega

et al. 2020

Health Technol Assess

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Background Quality of life for children and adolescents living with serious parental mental illness can be impaired, but evidence-based interventions to improve it are scarce. Objective Co-production of a child-centred intervention [called Young Simplifying Mental Illness plus Life Enhancement Skills (SMILES)] to improve the health-related quality of life of children and adolescents living with serious parental mental illness, and evaluating its acceptability and feasibility for delivery in NHS and community settings. Design Qualitative and co-production methods informed the development of the intervention (Phase I). A feasibility randomised controlled trial was designed to compare Young SMILES with treatment as usual (Phase II). Semistructured qualitative interviews were used to explore acceptability among children and adolescents living with their parents, who had serious mental illness, and their parents. A mixture of semistructured qualitative interviews and focus group research was used to examine feasibility among Young SMILES facilitators and referrers/non-referrers. Setting Randomisation was conducted after baseline measures were collected by the study co-ordinator, ensuring that the blinding of the statistician and research team was maintained to reduce detection bias. Participants Phase I: 14 children and adolescents living with serious parental mental illness, seven parents and 31 practitioners from social, educational and health-related sectors. Phase II: 40 children and adolescents living with serious parental mental illness, 33 parents, five referrers/non-referrers and 16 Young SMILES facilitators. Intervention Young SMILES was delivered at two sites: (1) Warrington, supported by the National Society for the Prevention of Cruelty to Children (NSPCC), and (2) Newcastle, supported by the NHS and Barnardo’s. An eight-session weekly group programme was delivered, with four to six children and adolescents living with serious parental mental illness per age-appropriate group (6–11 and 12–16 years). At week 4, a five-session parallel weekly programme was offered to the parents/carers. Sessions lasted 2 hours each and focused on improving mental health literacy, child–parent communication and children’s problem-solving skills. Main outcome measures Phase ll children and parents completed questionnaires at randomisation and then again at 4 and 6 months post randomisation. Quality of life was self-reported by children and proxy-reported by parents using the Paediatric Quality of Life questionnaire and KIDSCREEN. Semistructured interviews with parents (n = 14) and children (n = 17) who participated in the Young SMILES groups gathered information about their motivation to sign up to the study, their experiences of participating in the group sessions, and their perceived changes in themselves and their family members following intervention. Further interviews with individual referrers (n = 5) gathered information about challenges to recruitment and randomisation. Two focus groups (n = 16) with practitioners who facilitated the intervention explored their views of the format and content of the Young SMILES manual and their suggestions for changes. Results A total of 35 families were recruited: 20 were randomly allocated to Young SMILES group and 15 to treatment as usual. Of those, 28 families [15/20 (75%) in the intervention group and 13/15 (87%) in the control group] gave follow-up data at the primary end point (4 months post baseline). Participating children had high adherence to the intervention and high completion rates of the questionnaires. Children and adolescents living with their parents, who had serious mental illness, and their parents were mainly very positive and enthusiastic about Young SMILES, both of whom invoked the benefits of peer support and insight into parental difficulties. Although facilitators regarded Young SMILES as a meaningful and distinctive intervention having great potential, referrers identified several barriers to referring families to the study. One harm was reported by a parent, which was dealt with by the research team and the NSPCC in accordance with the standard operating procedures. Limitations The findings from our feasibility study are not sufficient to recommend a fully powered trial of Young SMILES in the near future. Although it was feasible to randomise children and adolescents living with serious parental mental illness of different ages to standardised, time-limited groups in both NHS and non-NHS settings, an intervention like Young SMILES is unlikely to address underlying core components of the vulnerability that children and adolescents living with serious parental mental illness express as a population over time. Conclusions Young SMILES was widely valued as unique in filling a recognised gap in need. Outcome measures in future studies of interventions for children and adolescents living with serious parental mental illness are more likely to capture change in individual risk factors for reduced quality of life by considering their unmet need, rather than on an aggregate construct of health-related quality of life overall, which may not reflect these young people’s needs. Future work A public health approach to intervention might be best. Most children and adolescents living with serious parental mental illness remain well most of the time, so, although their absolute risks are low across outcomes (and most will remain resilient most of the time), consistent population estimates find their relative risk to be high compared with unexposed children. A public health approach to intervention needs to be both tailored to the particular needs of children and adolescents living with serious parental mental illness and agile to these needs so that it can respond to fluctuations over time. Trial registration Current Controlled Trials ISRCTN36865046. Funding This project was funded by the National Institute of Health Research (NIHR) Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 24, No. 59. See the NIHR Journals Library website for further project information.

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Patients’Perceptions of Having a Good Life One Year after Arthritis Patient Education: A Qualitative Study Nested within a Randomized Controlled Trial

Cited by 6 publications

References 23 publications

A longitudinal study of educational needs among patients with inflammatory arthritis

A longitudinal study of educational needs among patients with inflammatory arthritis

Perspective chapter: NURSE-LED EDUCATION FOR PATIENTS WITH CHRONIC INFLAMMATORY ARTHRITIS

An intervention to improve the quality of life in children of parents with serious mental illness: the Young SMILES feasibility RCT

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