Patient capacity and constraints in the experience of chronic disease: a qualitative systematic review and thematic synthesis

Background:Nurse-led care has been shown to be clinically effective and cost effective in rheumatoid arthritis (RA) but the role of the nurse in early RA is not well defined. Evidence for processes of care in RA is limited and it is not known how well rheumatology nurse-led clinics meet care needs of people with early RA.Objectives:The aim of this study was to develop an understanding of rheumatology nurse-led care from the perspective of people with early RA.Methods:A qualitative systematic review was conducted. The review protocol is published in the International prospective register of systematic reviews.In March 2019, the following databases were searched: MEDLINE, EMBASE, CINAHL, PsycINFO and OpenGrey. Due to lack of studies in early RA this review included adults with early and established inflammatory arthritis, qualitative studies with data on patients’ perspectives of nurse-led care, published in peer-reviewed journals in English between 2010 and 2019. Two reviewers screened titles, abstracts and full texts. Data were extracted and managed in tables. Joanna Briggs Institute Critical Appraisal Checklist was used for quality assessment of the included studies. A thematic synthesis was undertaken using the framework of Thomas and Harden.1Results:The search identified 1034 records. After screening and assessing for eligibility, 8 qualitative studies were included in the review (133 patients), 2 studies included people with early RA. Three main themes were identified (Figure 1).Figure 1.Themes of nurse-led care from the perspective of people with RAProviding knowledge and skill. This theme delineated rheumatology nursing as providing professional expertise in the planning and delivery of care. The rheumatology nurse-led service included easy access via telephone helpline, consultations with the clinical nurse specialist for assessment of disease activity and care needs, planning of care, disease information and education, supporting self-management, and referral to rheumatologist and the multi-disciplinary team. People with RA highly valued the nurse expertise and specialist knowledge provided at nurse-led clinics.‘She was very good at informing me, so I have only praise for this ... because I have never had it like this before’. (Person with early RA).Using a person-centred approach.This theme showed nurse-led care using a person-centred approach combined with empathy and good communication skills, which created a good therapeutic environment. People with RA appreciated the person-centeredness, empathy and involvement of the nurse. ‘She is very sensitive. She can see if I am feeling bad and comes straight to me and asks: “How are you today?” ...You are treated and taken seriously’. (Person with early RA).Meeting patients‘ care needs. This theme presented nurse-led care as creating a sense of being empowered and psychologically supported in the management of RA and its impact. Nurse-led care made people with RA feel cared for, secure and confident. It added value to rheumatology care and made care complete.‘The thought of sticking a needle into my own stomach... it felt a bit like I would never manage to do that. However, they have been absolutely wonderful here ... and now I can do it myself’. (Person with early RA).Conclusion:Nurse-led care for people with RA is characterised by provision of rheumatology expertise using a person-centred approach, and patients‘ holistic care needs are being met. This study found a dearth of literature on perceptions of nurse-led care in people with early RA, which highlights the need for further research in this population.References:[1]Thomas J, Harden A. Methods for the thematic synthesis of qualitative research in systematic reviews.BMC Med Res Methodol2008; 8: 45.Disclosure of Interests:Anne-Marie Tetsche Sweeney: None declared, Candy McCabe: None declared, Caroline Flurey: None declared, Joanna Robson: None declared, Alice Berry: None declared, Pamela Richards: None declared, Mwidimi Ndosi Grant/research support from: Bristol Myers Squibb, Consultant of: Janssen, Pfizer

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Smoke-free homes: what are the barriers, motivators and enablers? A qualitative systematic review and thematic synthesis

BMJ Open ◽

10.1136/bmjopen-2015-010260 ◽

2016 ◽

Vol 6 (3) ◽

pp. e010260 ◽

Cited By ~ 43

Author(s):

Megan E Passey ◽

Jo M Longman ◽

Jude Robinson ◽

John Wiggers ◽

Laura L Jones

Keyword(s):

Systematic Review ◽

Thematic Synthesis ◽

Qualitative Systematic Review

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Perceptions of risk in pregnancy with chronic disease: A systematic review and thematic synthesis

PLoS ONE ◽

10.1371/journal.pone.0254956 ◽

2021 ◽

Vol 16 (7) ◽

pp. e0254956

Author(s):

Elizabeth R. Ralston ◽

Priscilla Smith ◽

Joseph Chilcot ◽

Sergio A. Silverio ◽

Kate Bramham

Keyword(s):

Systematic Review ◽

Chronic Disease ◽

Chronic Diseases ◽

Perceived Risk ◽

Risk Perceptions ◽

Grey Literature ◽

Pregnancy Risk ◽

Thematic Synthesis ◽

Increased Risk ◽

In Pregnancy

Background Women with chronic disease are at increased risk of adverse pregnancy outcomes. Pregnancies which pose higher risk, often require increased medical supervision and intervention. How women perceive their pregnancy risk and its impact on health behaviour is poorly understood. The aim of this systematic review of qualitative literature is to evaluate risk perceptions of pregnancy in women with chronic disease. Methods Eleven electronic databases including grey literature were systematically searched for qualitative studies published in English which reported on pregnancy, risk perception and chronic disease. Full texts were reviewed by two researchers, independently. Quality was assessed using the Critical Appraisal Skills Programme Qualitative checklist and data were synthesised using a thematic synthesis approach. The analysis used all text under the findings or results section from each included paper as data. The protocol was registered with PROSPERO. Results Eight studies were included in the review. Three themes with sub-themes were constructed from the analysis including: Information Synthesis (Sub-themes: Risk to Self and Risk to Baby), Psychosocial Factors (Sub-themes: Emotional Response, Self-efficacy, Healthcare Relationship), and Impact on Behaviour (Sub-themes: Perceived Risk and Objective Risk). Themes fitted within an overarching concept of Balancing Act. The themes together inter-relate to understand how women with chronic disease perceive their risk in pregnancy. Conclusions Women’s pregnancy-related behaviour and engagement with healthcare services appear to be influenced by their perception of pregnancy risk. Women with chronic disease have risk perceptions which are highly individualised. Assessment and communication of women’s pregnancy risk should consider their own understanding and perception of risk. Different chronic diseases introduce diverse pregnancy risks and further research is needed to understand women’s risk perceptions in specific chronic diseases.

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Disrespectful intrapartum care during facility-based delivery in sub-Saharan Africa: A qualitative systematic review and thematic synthesis of women's perceptions and experiences

Social Science & Medicine ◽

10.1016/j.socscimed.2016.09.039 ◽

2016 ◽

Vol 169 ◽

pp. 157-170 ◽

Cited By ~ 59

Author(s):

Susan Bradley ◽

Christine McCourt ◽

Juliet Rayment ◽

Divya Parmar

Keyword(s):

Systematic Review ◽

Sub Saharan Africa ◽

Intrapartum Care ◽

Thematic Synthesis ◽

Qualitative Systematic Review ◽

Women’S Perceptions ◽

Sub Saharan

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Decision-making and future planning for children with life-limiting conditions: a qualitative systematic review and thematic synthesis

Child Care Health and Development ◽

10.1111/cch.12461 ◽

2017 ◽

Vol 43 (5) ◽

pp. 627-644 ◽

Cited By ~ 3

Author(s):

E. Popejoy ◽

K. Pollock ◽

K. Almack ◽

J. C. Manning ◽

B. Johnston

Keyword(s):

Systematic Review ◽

Decision Making ◽

Future Planning ◽

Thematic Synthesis ◽

Qualitative Systematic Review

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Influence of significant others on work participation of individuals with chronic diseases: a systematic review

BMJ Open ◽

10.1136/bmjopen-2018-021742 ◽

2019 ◽

Vol 9 (1) ◽

pp. e021742 ◽

Cited By ~ 8

Author(s):

Nicole C Snippen ◽

Haitze J de Vries ◽

Sylvia J van der Burg-Vermeulen ◽

Mariët Hagedoorn ◽

Sandra Brouwer

Keyword(s):

Systematic Review ◽

Chronic Disease ◽

Quality Assessment ◽

Chronic Diseases ◽

Significant Others ◽

Work Participation ◽

Qualitative Studies ◽

Current Evidence ◽

Open Communication ◽

Thematic Synthesis

ObjectiveIt is widely recognised that significant others (SOs), such as a partner, family member or friend, can influence health outcomes of individuals with a chronic disease. However, not much is known about which specific cognitions (ie, illness perceptions and expectation of work ability) and behaviours (eg, emotional and practical support) of SOs influence work participation. Therefore, we aimed to identify cognitions and behaviours of SOs that are related to work participation of individuals with a chronic disease.DesignA systematic review and thematic synthesis.Data sourcesPubMed, Embase, PsycINFO, SocINDEX and Web of Science were searched until 28 March 2017.Eligibility criteria for selecting studiesWe included studies reporting on cognitions and behaviours of SOs related to work participation in populations with various chronic diseases.Data extraction and synthesisTwo independent reviewers extracted the data and performed a quality assessment using the Quality Assessment Tool for Quantitative Studies from the Effective Public Health Practice Project 2007 and a checklist for assessment of qualitative studies derived from the Cochrane Supplemental Handbook Guidance. Evidence was thematically synthesised.ResultsOut of 5168 articles, 18 were included (15 qualitative and 3 quantitative) of moderate to high quality. Studies were on cancer, chronic pain, brain injuries and mental health disorders. After thematic synthesis 27 factors could be distinguished. Consistent evidence was found that SOs’ positive and encouraging attitudes regarding work participation, encouragement and motivating behaviour and open communication with patients are facilitators for work participation. Consistently reported barriers were SOs’ positive attitudes towards sickness absence and advise, encouragement or pressure to refrain from work.ConclusionsOur findings show that several cognitions and behaviours of SOs can facilitate or hinder work participation of individuals with a chronic disease. Intervening on these factors by involving SOs in disability prevention and return to work intervention strategies may be beneficial. More prognostic studies are needed, as the current evidence is mostly based on qualitative studies.

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