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      Parental Cancer: Acceptance and Usability of an Information Booklet for Affected Parents

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          Abstract

          Background

          Parents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: (1) investigating the acceptability and usability of the information booklet, (2) determining parental information needs, and (3) collating suggestions for implementation. Finally, we adapted the booklet according to the findings.

          Methods

          We interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.

          Results

          (1) Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. (2) Following dimensions were identified as information needs: (a) communication, (b) support offers, (c) children’s disease understanding and needs, (d) organization of family life, (e) competence in parenting, and (f) sources of additional information material. (3) The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.

          Conclusion

          Indicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated.

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          Most cited references27

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          DISCERN: an instrument for judging the quality of written consumer health information on treatment choices.

          To develop a short instrument, called DISCERN, which will enable patients and information providers to judge the quality of written information about treatment choices. DISCERN will also facilitate the production of new, high quality, evidence-based consumer health information. An expert panel, representing a range of expertise in consumer health information, generated criteria from a random sample of information for three medical conditions with varying degrees of evidence: myocardial infarction, endometriosis, and chronic fatigue syndrome. A graft instrument, based on this analysis, was tested by the panel on a random sample of new material for the same three conditions. The panel re-drafted the instrument to take account of the results of the test. The DISCERN instrument was finally tested by a national sample of 15 information providers and 13 self help group members on a random sample of leaflets from 19 major national self help organisations. Participants also completed an 8 item questionnaire concerning the face and content validity of the instrument. Chance corrected agreement (weighted kappa) for the overall quality rating was kappa = 0.53 (95% CI kappa = 0.48 to kappa = 0.59) among the expert panel, kappa = 0.40 (95% CI kappa = 0.36 to kappa = 0.43) among information providers, and kappa = 0.23 (95% CI kappa = 0.19 to kappa = 0.27) among self help group members. Higher agreement levels were associated with experience of using the instrument and with professional knowledge of consumer health information. Levels of agreement varied across individual items on the instrument, reflecting the need for subjectivity in rating certain criteria. The trends in levels of agreement were similar among all groups. The final instrument consisted of 15 questions plus an overall quality rating. Responses to the questionnaire after the final testing revealed the instrument to have good face and content validity and to be generally applicable. DISCERN is a reliable and valid instrument for judging the quality of written consumer health information. While some subjectivity is required for rating certain criteria, the findings demonstrate that the instrument can be applied by experienced users and providers of health information to discriminate between publications of high and low quality. The instrument will also be of benefit to patients, though its use will be improved by training.
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            Distress Management, Version 3.2019, NCCN Clinical Practice Guidelines in Oncology

            Distress is defined in the NCCN Guidelines for Distress Management as a multifactorial, unpleasant experience of a psychologic (ie, cognitive, behavioral, emotional), social, spiritual, and/or physical nature that may interfere with the ability to cope effectively with cancer, its physical symptoms, and its treatment. Early evaluation and screening for distress leads to early and timely management of psychologic distress, which in turn improves medical management. The panel for the Distress Management Guidelines recently added a new principles section including guidance on implementation of standards of psychosocial care for patients with cancer.
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              The relation between information provision and health-related quality of life, anxiety and depression among cancer survivors: a systematic review

              Background: Providing information that is congruent with patients’ needs is an important determinant for patient satisfaction and might also affect health-related quality of life (HRQoL) and anxiety and depression levels of cancer survivors. Design: The authors systematically reviewed the available literature on the relationship between information provision and HRQoL, anxiety and depression. A PubMed literature search for original articles published until February 2010 was carried out. Twenty-five articles, all conducted between 1996 and 2009, which met the predefined inclusion criteria, were subjected to a quality checklist. Results: Satisfied patients, patients with fulfilled information needs, and patients who experience less information barriers, in general have a better HRQoL and less anxiety and depression. Out of eight intervention studies that aimed to improve information provision, only one showed a positive association with better HRQoL. Conclusion: Health care providers must pay more attention to patient-centred information provision. Additional research is needed to make definitive conclusions about information interventions as most results did not reach statistical significance due to methodological constraints. The quick development of the relatively young research field of patient-reported outcomes in cancer survivorship will make it possible to conduct better quality studies in the future.
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                Author and article information

                Contributors
                Journal
                Front Psychol
                Front Psychol
                Front. Psychol.
                Frontiers in Psychology
                Frontiers Media S.A.
                1664-1078
                24 February 2022
                2022
                : 13
                : 769298
                Affiliations
                [1] 1Department of Medical Psychology, University Medical Center Hamburg-Eppendorf , Hamburg, Germany
                [2] 2Clinical Psychology, Helmut-Schmidt-University/University of the Federal Armed Forces , Hamburg, Germany
                Author notes

                Edited by: Imad Maatouk, University of Würzburg, Germany

                Reviewed by: Alix Hall, The University of Newcastle, Australia; Ute Goerling, Charité Universitätsmedizin Berlin, Germany

                *Correspondence: Laura Inhestern, l.inhestern@ 123456uke.de

                ORCID: Leslie Melchiors, orcid.org/0000-0003-0740-6356

                This article was submitted to Psycho-Oncology, a section of the journal Frontiers in Psychology

                Article
                10.3389/fpsyg.2022.769298
                8907886
                35282192
                36d268ba-f2fe-4fea-95ec-16883b1228e0
                Copyright © 2022 Melchiors, Geertz and Inhestern.

                This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.

                History
                : 01 September 2021
                : 17 January 2022
                Page count
                Figures: 0, Tables: 2, Equations: 0, References: 27, Pages: 8, Words: 6003
                Categories
                Psychology
                Original Research

                Clinical Psychology & Psychiatry
                parental cancer,information needs,information booklet,qualitative evaluation,psychosocial support,acceptance and usability

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