What do parents think of using informational videos to support recruitment for parenting trials? A qualitative study

Abstract Background Lower than expected recruitment and retention rates are common challenges in parenting trials—particularly for community-based trials targeting parents of young children that rely on face-to-face recruitment by frontline workers. Recruitment requires parental informed consent, yet information sheets have been criticized for being lengthy and complex, and particularly challenging for parents with low literacy. Recent innovations include ‘talking head’ information videos. This paper aims to explore parent perceptions of using a ‘talking head’ video to support informed consent, recruitment, and retention procedures in parenting trials. Methods We conducted semi-structured interviews with a sample of 24 mothers recruited after their final follow-ups in two different parenting trials in Denmark. Before consenting to participate in the trials, parents were invited to view a video of a member of the study team giving information about the study, and again before the interviews for the current study. The audio data was transcribed and thematic analysis was conducted. Results We identified three overarching themes: (1) general impression of the video, (2) thoughts on participation in research, and (3) recruitment and retention. Participants were generally positive in their appraisal of the two talking head informational videos. We found that participants felt that a mix of paper-based and video-based sources of information would enable them to make an informed choice about whether to participate in a research study. We also found that a professionally produced video featuring a key member of the study team produced a feeling of commitment to the study that could impact retention rates. Conclusions Informational videos are acceptable to parents; however, co-production or participant/patient involvement in the development of such videos is recommended. Informational videos may not increase recruitment but have the potential for improving retention. Key design recommendations are to ensure a ‘professional’ look to the video, to supplement videos with paper-based information, to keep the length to < 3 min, and for the ‘talking head’ part to feature a key member of the study team.

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Recruitment and retention of primary care patients into a research study investigating medication adherence

Journal of Primary Health Care ◽

10.1071/hc11204 ◽

2011 ◽

Vol 3 (3) ◽

pp. 204

Author(s):

Shih Yen Chang ◽

Simon Horsburgh ◽

Pauline Norris ◽

Rhiannon Braund

Keyword(s):

Health Care ◽

Primary Health Care ◽

Medication Adherence ◽

Drop Out ◽

Retention Rates ◽

Sources Of Information ◽

Loss To Follow Up ◽

Recruitment And Retention ◽

Primary Health ◽

General Practices

INTRODUCTION: General practitioners (GPs) and patients are key sources of information for investigating primary health care. However, recruiting these into health care studies has been reported to be difficult. AIM: This study aimed to determine the recruitment and retention rates of GP practices and patients into a research project in the primary health care setting. METHODS: All general practices in Dunedin, New Zealand, with three or more practitioners were invited to participate in a study investigating medication adherence. In practices that agreed to participate, 100 patients were recruited from waiting rooms and followed up by telephone over six months. The main outcome measures included recruitment rates of GPs and patients, the level of retention and loss to follow-up of patients over a six-month period, the drop out and reasons for this drop out. RESULTS: Only two of the 15 practices agreed to participate. To recruit 100 patients, 203 people were approached. Reasons for not wanting to participate were recorded where possible. Of those that agreed to participate, 86% of doctor consultations resulted in a prescription and, of these prescriptions, 87% were reported to be collected as prescribed. At the end of six months, 68 patients still remained in the study. DISCUSSION: Patients were interested in being involved in this type of study and were recruited at a rate of 82% and 56% depending on the practice. After the initial drop out, most patients remained in the study until the conclusion. Recruitment of general practices remains challenging. KEYWORDS: Patient compliance; patient recruitment; primary health care

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Informed consent: Towards improved lay-friendliness of patient information sheets

Communication & Medicine ◽

10.1558/cam.v10i3.201 ◽

2014 ◽

Vol 10 (3) ◽

pp. 201-211

Author(s):

Morten Pilegaard ◽

Hanne Berg Ravn

Keyword(s):

Informed Consent ◽

Information Structure ◽

Language Use ◽

Ethical Standards ◽

Structured Interviews ◽

Explorative Study ◽

Microsoft Word ◽

Text Production ◽

Linguistic Intervention ◽

Set Up

Regional research ethics committee (REC) members have voiced a need for the linguistic improvement of informed consent documents to ensure duly informed consent and to ease committee deliberation. We have little knowledge of what elements of language use hamper comprehension, or of the extent of medical researchers’ appreciation of this problem and their willingness to accept intervention. This qualitative, explorative study proposes an intervention design and tests its feasibility and acceptability. Semi-structured interviews with potential REC applicants informed a linguistic intervention benchmarked against existing guidelines, mandated locally and nationally, and then evaluated quantitatively in a semi-controlled set-up and qualitatively via questionnaires. Potential applicants professed the psychological acceptability of linguistic intervention. The intervention comprised a downloadable Microsoft Word template outlining information structure, a detailed guideline offering advice for each move and self-selected linguistic screening. It was used by 14 applicants and had a measurable effect on REC deliberation time and approval rates. The intervention instruments overall made it easier for applicants to produce informed consent documents meeting prescribed ethical standards concerning lay-friendliness. In conclusion, it was found that linguistic intervention is relevant, feasible and psychologically acceptable to REC applicants; it aids their text production process and seems to enhance the lay-friendliness of these texts.

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Readability of Informed Consent Forms: Analysis and Recommendations for Development of Consent Forms for Use with Communities with Limited or Low Literacy

Proceedings of the Annual Conference of CAIS / Actes du congrès annuel de l'ACSI ◽

10.29173/cais945 ◽

2016 ◽

Author(s):

Miraida Morales ◽

Sarah Barriage

Keyword(s):

Informed Consent ◽

Pilot Study ◽

Informed Consent Process ◽

Consent Process ◽

Measurement Tool ◽

Low Literacy ◽

Consent Forms ◽

Early Readers ◽

Research With Children ◽

Consentement Éclairé

This poster presents a pilot study that analyzed a small corpus of informed consent forms used in research with children, adolescents, and adult early readers using Coh-Metrix, a readability measurement tool. Recommendations for increasing readability of consent forms in order to improve the informed consent process are also provided. Cette affiche présente une étude pilote qui a analysé un corpus restreint de formulaires de consentement éclairé utilisés dans la recherche avec les enfants, les adolescents et les lecteurs précoces adultes, utilisant Coh-Metrix, un outil de mesure de la lisibilité. Nous fournissons également des recommandations pour augmenter la lisibilité des formulaires de consentement afin d'améliorer le processus de consentement éclairé.

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The evolution of parents’ beliefs about childhood cancer during diagnostic communication: a qualitative study in Guatemala

BMJ Global Health ◽

10.1136/bmjgh-2020-004653 ◽

2021 ◽

Vol 6 (5) ◽

pp. e004653

Author(s):

Dylan Graetz ◽

Silvia Rivas ◽

Lucia Fuentes ◽

Ana Cáceres-Serrano ◽

Gia Ferrara ◽

...

Keyword(s):

Cancer Education ◽

Medical Model ◽

Communication Process ◽

Sources Of Information ◽

Cancer Communication ◽

Structured Interviews ◽

Children With Cancer ◽

Cancer Centre ◽

Treatment Abandonment ◽

Cancer Beliefs

IntroductionFatalistic cancer beliefs may contribute to delayed diagnosis and poor outcomes, including treatment abandonment, for children with cancer. This study explored Guatemalan parents’ cancer beliefs during initial paediatric cancer communication, and the sociocultural and contextual factors that influence these beliefs.MethodsTwenty families of children with cancer were included in this study. We audio-recorded psychosocial conversations with psychologists and diagnostic conversations with oncologists, then conducted semi-structured interviews with parents to explore the evolution of their cancer beliefs. Audio-recordings were transcribed and translated from Spanish into English, with additional review in both languages by bilingual team members. All 60 transcripts were thematically analysed using a priori and novel codes.ResultsGuatemalan parents’ beliefs evolve as they learn about cancer through various sources. Sources of information external to the cancer centre, including prior experiences with cancer, media exposure, community discussion and clinical encounters, contribute to pre-existing beliefs. Many parents’ pre-existing cancer beliefs are fatalistic; some are influenced by Mayan spirituality. Sources internal to the cancer centre include psychologists and oncologists, other providers, other patients and families. Psychologists acknowledge pre-existing beliefs and deliver cancer education using verbal explanations and hand-drawings. Oncologists provide diagnostic information and outline treatment plans. Both support hope by providing a path toward cure. Parents’ lived experience is a culmination of sources and simultaneously independent. Ultimately most parents arrive at an understanding of cancer that is consistent with an allopathic medical model and offers optimism about outcomes.ConclusionAn interdisciplinary communication process that includes cancer education, is attentive to pre-existing beliefs, and supports hope may encourage acceptance of the allopathic medical model and need for treatment. Providers in settings of all resource levels may be able to use these techniques to support cross-cultural cancer communication, reduce treatment abandonment and improve therapy adherence.

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Couples’ experiences with expanded carrier screening: evaluation of a university hospital screening offer

European Journal of Human Genetics ◽

10.1038/s41431-021-00923-9 ◽

2021 ◽

Author(s):

Ivy van Dijke ◽

Phillis Lakeman ◽

Naoual Sabiri ◽

Hanna Rusticus ◽

Cecile P. E. Ottenheim ◽

...

Keyword(s):

High Risk ◽

Medical Center ◽

Informed Choice ◽

Carrier Screening ◽

University Hospital ◽

Structured Interviews ◽

Expanded Carrier Screening ◽

Post Test ◽

Future Child ◽

Clinically Significant

AbstractPreconception carrier screening offers couples the possibility to receive information about the risk of having a child with a recessive disorder. Since 2016, an expanded carrier screening (ECS) test for 50 severe autosomal recessive disorders has been available at Amsterdam Medical Center, a Dutch university hospital. This mixed-methods study evaluated the experiences of couples that participated in the carrier screening offer, including high-risk participants, as well as participants with a general population risk. All participants received genetic counselling, and pre- (n = 132) and post-test (n = 86) questionnaires and semi-structured interviews (n = 16) were administered. The most important reason to have ECS was to spare a future child a life with a severe disorder (47%). The majority of survey respondents made an informed decision (86%), as assessed by the Multidimensional Measure of Informed Choice. Among the 86 respondents, 27 individual carriers and no new carrier couples were identified. Turn-around time of the test results was considered too long and costs were perceived as too high. Overall, mean levels of anxiety were not clinically elevated. High-risk respondents (n = 89) and pregnant respondents (n = 13) experienced higher levels of anxiety before testing, which decreased after receiving the test result. Although not clinically significant, distress was on average higher for carriers compared to non-carriers (p < 0.0001). All respondents would opt for the test again, and 80.2% would recommend it to others. The results suggest that ECS should ideally be offered before pregnancy, to minimise anxiety. This study could inform current and future implementation initiatives of preconception ECS.

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Near-falls in Singapore community-dwelling older adults: a feasibility study

Pilot and Feasibility Studies ◽

10.1186/s40814-020-00748-1 ◽

2021 ◽

Vol 7 (1) ◽

Author(s):

Shawn Leng-Hsien Soh ◽

Chee-Wee Tan ◽

Judith Lane ◽

Ting-Ting Yeh ◽

Benjamin Soon

Keyword(s):

Older Adults ◽

Retention Rate ◽

Community Dwelling ◽

Retention Rates ◽

Reach To Grasp ◽

Balance Recovery ◽

Recruitment And Retention ◽

Body Regions ◽

Near Falls ◽

Community Dwelling Older Adults

Abstract Background A near-fall is defined as a loss of balance that would result in a fall if sufficient balance recovery manoeuvres are not executed. Compared to falls, near-falls and its associated balance recovery manoeuvres have been understudied. Older adults may not recognise a near-fall or identify the use of their balance recovery manoeuvres to prevent a fall. The consensus on the methods to collect near-fall data is lacking. The primary objective of this study was to determine the feasibility of recruitment and retention. Secondary objectives were to establish evidence that Singapore community-dwelling older adults can identify near-falls and associated balance recovery manoeuvres. Texting and calling methods were explored as reporting methods. Methods This study took place in Singapore (September to October 2019). Participants were healthy, community-dwelling adults aged 65 or older. Recruitment was done through poster advertisement, and all participants gave informed consent. Participants attended a briefing session and reported their near-fall or fall incidence over 21 days using either daily texting or calling. The primary outcome measures were the recruitment rate, retention rate, preferred modes for data reporting and ability to report near-falls or falls. Secondary outcomes included the self-reported incidence of falls and near-falls. Results Thirty older adults were recruited in 5 weeks. All participants completed the study. They understood near-fall concepts and were able to report the occurrence and relevant balance recovery manoeuvres used to prevent a fall. 87% (26/30) chose to text while 13% (4/30) selected calling as their reporting method. One actual fall (0.16%) out of 630 responses was reported. Thirty-six incidents (5.7%) of near-falls were recorded. Sixteen participants (53.3%) experienced near-falls and half of this group experienced two or more near-falls. The use of reach-to-grasp strategy (36%), compensatory stepping (52.8%), and other body regions (11.2%) were used to prevent the fall. Conclusions The study provided evidence that studying near-falls in Singapore community-dwelling older adults is feasible and can be applied to a large-scale study. Recruitment and retention rates were good. Older adults were able to identify near-falls and balance recovery manoeuvres. Both texting and calling were feasible reporting methods, but texting was preferred. Trial registration ClinicalTrials identifier: NCT04087551. Registered on September 12, 2019

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Health workers’ perspectives on informed consent for caesarean section in Southern Malawi

BMC Medical Ethics ◽

10.1186/s12910-021-00584-9 ◽

2021 ◽

Vol 22 (1) ◽

Author(s):

Wouter Bakker ◽

Siem Zethof ◽

Felix Nansongole ◽

Kelvin Kilowe ◽

Jos van Roosmalen ◽

...

Keyword(s):

Informed Consent ◽

Caesarean Section ◽

Health Workers ◽

Group Discussion ◽

Legal Protection ◽

Analytical Framework ◽

Structured Interviews ◽

Middle Income ◽

Partial Disclosure ◽

Labour Pains

Abstract Objective Informed consent is a prerequisite for caesarean section, the commonest surgical procedure in low- and middle-income settings, but not always acquired to an appropriate extent. Exploring perceptions of health care workers may aid in improving clinical practice around informed consent. We aim to explore health workers’ beliefs and experiences related to principles and practice of informed consent. Methods Qualitative study conducted between January and June 2018 in a rural 150-bed mission hospital in Southern Malawi. Clinical observations, semi-structured interviews and a focus group discussion were used to collect data. Participants were 22 clinical officers, nurse-midwives and midwifery students involved in maternity care. Data were analysed to identify themes and construct an analytical framework. Results Definition and purpose of informed consent revolved around providing information, respecting women’s autonomy and achieving legal protection. Due to fear of blame and litigation, health workers preferred written consent. Written consent requires active participation by the consenting individual and was perceived to transfer liability to that person. A woman’s refusal to provide written informed consent may pose a dilemma for the health worker between doing good and respecting autonomy. To prevent such refusal, health workers said to only partially disclose surgical risks in order to minimize women's anxiety. Commonly perceived barriers to obtain a fully informed consent were labour pains, language barriers, women’s lack of education and their dependency on others to make decisions. Conclusions Health workers are familiar with the principles around informed consent and aware of its advantages, but fear of blame and litigation, partial disclosure of risks and barriers to communication hamper the process of obtaining informed consent. Findings can be used to develop interventions to improve the informed consent process.

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Perspectives on self-managed abortion among providers in hospitals along the Texas–Mexico border

BMC Women s Health ◽

10.1186/s12905-021-01281-w ◽

2021 ◽

Vol 21 (1) ◽

Author(s):

Sarah Raifman ◽

Sarah E. Baum ◽

Kari White ◽

Kristine Hopkins ◽

Tony Ogburn ◽

...

Keyword(s):

Early Pregnancy ◽

Pregnancy Termination ◽

Expectant Management ◽

Clinical Intervention ◽

Structured Interviews ◽

Local Resources ◽

Provider Experiences ◽

Study Team ◽

Mexico Border ◽

Provider Knowledge

Abstract Background Following self-managed abortion (SMA), or a pregnancy termination attempt outside of the formal health system, some patients may seek care in an emergency department. Information about provider experiences treating these patients in hospital settings on the Texas-Mexico border is lacking. Methods The study team conducted semi-structured interviews with physicians, advanced practice clinicians, and nurses who had experience with patients presenting with early pregnancy complications in emergency and/or labor and delivery departments in five hospitals near the Texas-Mexico border. Interview questions focused on respondents’ roles at the hospital, knowledge of abortion services and laws, perspectives on SMA trends, experiences treating patients presenting after SMA, and potential gaps in training related to abortion. Researchers conducted interviews in person between October 2017 and January 2018, and analyzed transcripts using a thematic analysis approach. Results Most of the 54 participants interviewed said that the care provided to SMA patients was, and should be, the same as for patients presenting after miscarriage. The majority had treated a patient they suspected or confirmed had attempted SMA; typically, these cases required only expectant management and confirmation of pregnancy termination, or treatment for incomplete abortion. In rare cases, further clinical intervention was required. Many providers lacked clinical and legal knowledge about abortion, including local resources available. Conclusions Treatment provided to SMA patients is similar to that provided to patients presenting after early pregnancy loss. Lack of provider knowledge about abortion and SMA, despite their involvement with SMA patients, highlights a need for improved training.

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