Infertility; isolation and the Internet: A qualitative interview study

Hinton, Lisa; Kurinczuk, Jennifer J; Ziébland, Sue

doi:10.1016/j.pec.2010.09.023

Cited by 96 publications

(73 citation statements)

References 17 publications

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“…31,78 In our secondary analysis we found that this was most definitely the case, with interviewees speaking of having had both 'positive' (e.g. feeling 'supported', 'empowered', 'inspired') and 'negative' (e.g.…”

Section: Work Package 1bmentioning

confidence: 84%

“…29,30 In contrast, depending on their content, others' experiences may arouse feelings of anxiety and lead to unrealistic expectations, false hopes or even despair, fear, guilt, anger and inadequacy if others seem to be managing better. Patients' feelings of despair at their own condition may become worse if they find out that peers have fared badly; 31 internet-based support groups are sometimes dominated by a single viewpoint. How one responds to other people's experiences depends greatly on one's mood at the time of the encounter, and, if that goes badly, it can reinforce one's vulnerability or feelings of inferiority.…”

Section: Work Package 1amentioning

confidence: 99%

“…For example, Hinton et al, 31 writing about the use of online infertility support groups, drew attention to the possibility that web support could increase real-world isolation by reinforcing the notion that only those who have dealt with infertility themselves could possibly understand what it is like. A related idea, drawing on the work of Nicholas Negroponte,33 is that by enabling people to refine and personalise all of the information they receive (characterised as 'The Daily Me'), they will rarely be exposed to any ideas that challenge their own.…”

Section: Maintaining Relationships With Othersmentioning

confidence: 99%

“…31 This results in a tension. To learn from PEx and consider it relevant to his or her own situation, the recipient of the PEx needs to identify with the person sharing it.…”

Section: Identification Mediation and Visualisation In Online Patienmentioning

confidence: 99%

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Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

Ziébland

Powell

Briggs

et al. 2016

Programme Grants Appl Res

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BackgroundTraditional health information has been based on facts and figures and not on patient experience (PEx). Websites featuring people’s accounts of their experiences of health and illness are popular as a source of information, support and much else. However, there are concerns that experiential information on the internet might have adverse effects on health.AimsTo find out whether, when and how the NHS should incorporate PEx into online health information and elucidate the mechanisms through which PEx might influence health, develop a tool to measure the effects of online PEx, explore how PEx is used, and investigate the feasibility and acceptability of a randomised controlled trial of online PEx.MethodsMixed methods, including a conceptual literature review, qualitative secondary data analysis, the development of a new questionnaire, online ethnography, observational and experimental studies in an internet café environment, and finally feasibility trials to compare new websites based on PEx with those based on facts and figures.ResultsThe review concluded that online PEx could affect health outcomes through seven domains (information, support, affecting relationships, providing ideas on how to use health services, influencing behaviour change, learning to tell the story and visualising illness). We developed the e-Health Impact Questionnaire, which demonstrates good psychometric properties and is suitable for use across different health groups and various styles of online information. Online ethnographic studies found three types of PEx on multiple sclerosis (MS) platforms: accounts of ‘living with MS’, self-expression and creativity, and experiences of health care and treatment. Observational and laboratory-based methods included studies of how people find and use PEx to inform health choices. We developed a three-stage model (gating, the engagement loop and outcomes) which guided the development of six prototype multimedia websites featuring either experiential information (intervention) or factual information (comparator) for three exemplar health issues. We evaluated the feasibility and acceptability of a trial of the prototype PEx websites, comparing self-report and process measures with a comparator. In the three conditions we randomised 87 (smoking cessation), 148 (asthma), and 42 (caring for someone with MS) participants. At final (2-week) follow-up, retention rates were 75%, 82% and 86%, for smoking cessation, asthma and MS carers, respectively. Usage of the allocated websites was low. The median number of logins to the websites over the 2-week period was two, two and four; the median number of page views was 10, 15 and 27.5, respectively, with a median total duration on site of 9 minutes, 17 minutes and 31.5 minutes respectively. There were no reported adverse events or harms. The qualitative interviews with 30 trial participants found that the trial methods were acceptable and not burdensome and that preferences for combinations of different types of information were both idiosyncratic and dependent on timing and need.LimitationsThis programme used a pragmatic, mixed-methods approach, in which we adapted some standard approaches (e.g. realist review). The conceptual review provided a framework for the whole programme but did not draw on a single overarching theoretically informed approach. Instead, we used relevant theory and methods from the work package leads, who represented a range of disciplines.ConclusionsOnline PEx is not seen as an alternative to facts, or to care from a health professional, but is used in addition to other sources of information, support and expression. This programme of work indicates how the sharing of online PEx may benefit people, and how this can be measured. A randomised controlled trial is feasible but an allocated ‘exposure’ to a ‘dose of information’ is far from from how online experiences are shared in everyday life. Future work evaluating online health interventions which incorporate personal experiences should aim to reflect ‘natural’ use of the internet and might include online ethnography and offline interviews. Studies might explore how and why people use online sources of experience-based health information, and the effects on subsequent behaviour and health and social outcomes in different conditions. Future intervention research evaluating online health interventions should examine and explain issues of engagement and use, and seek to identify how to increase engagement.Trial registrationCurrent Controlled Trials ISRCTN29549695.FundingThis project was funded by the Programme Grants for Applied Research programme and will be published in full inProgramme Grants for Applied Research; Vol. 4, No. 17. See the NIHR Journals Library website for further project information.

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Section: Work Package 1bmentioning

confidence: 84%

Section: Work Package 1amentioning

confidence: 99%

Section: Maintaining Relationships With Othersmentioning

confidence: 99%

“…31 This results in a tension. To learn from PEx and consider it relevant to his or her own situation, the recipient of the PEx needs to identify with the person sharing it.…”

Section: Identification Mediation and Visualisation In Online Patienmentioning

confidence: 99%

See 2 more Smart Citations

Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

Ziébland

Powell

Briggs

et al. 2016

Programme Grants Appl Res

Self Cite

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“…22 This article draws on in-depth interviews from a study of people's experiences of infertility, as well as their information and support needs. 23,24 In addition to the patient interviews, a focus group of GPs explored doctors' perspectives on the accounts of primary care consultations. This analysis adds to the literature by considering perspectives from both sides of the general practice consultation.…”

Section: Resultsmentioning

confidence: 99%

Reassured or fobbed off? Perspectives on infertility consultations in primary care: a qualitative study

Hinton¹,

Kurinczuk²,

Ziébland³

2012

Br J Gen Pract

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BackgroundInfertility affects 9% of couples in the UK. Most couples who visit their GP because they are worried about their fertility will ultimately conceive, but a few will not. Treatment usually happens in secondary care, but GPs can have an invaluable role in starting investigations, referring, and giving support throughout treatment and beyond. AimTo inform clinical practice by exploring primary care experiences of infertility treatment among females and males, and discussing findings with a reference group of GPs to explore practice experience. Design and settingA qualitative patient interview and GP focus group study. Interviews were conducted in patients homes in England and Scotland; the focus group was held at a national conference. MethodAn in-depth interview study was conducted with 27 females and 11 males. A maximum variation sample was sought and interviews were transcribed for thematic analysis. Results were discussed with a focus group of GPs to elicit their views. ResultsFeeling that they were being taken seriously was very important to patients. Some felt that their concerns were not taken seriously, or that their GP did not appear to be well informed about infertility. The focus group of GPs highlighted the role of protocols in their management of patients who are infertile, as well as the difficulty GPs faced in communicating both reassurance and engagement. ConclusionSimple things that GPs say and do, such as describing the 'action plan' at the first consultation, could make a real difference to demonstrating that they are taking the fertility problem seriously.

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Patient Engagement in Treatment in an Information Age

Stevenson¹,

Seguin²

2020

The Wiley Handbook of Healthcare Treatment Engagement

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Infertility; isolation and the Internet: A qualitative interview study

Cited by 96 publications

References 17 publications

Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

Examining the role of patients’ experiences as a resource for choice and decision-making in health care: a creative, interdisciplinary mixed-method study in digital health

Reassured or fobbed off? Perspectives on infertility consultations in primary care: a qualitative study

Patient Engagement in Treatment in an Information Age

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