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Developing video resources to reduce the burden of caring for persons with brain cancer

  • Elisabeth Coyne
    Correspondence
    Corresponding author. School of Nursing & Midwifery Griffith University, Logan Campus, University Drive, Meadowbrook, Qld, 4131, Australia.
    Affiliations
    School of Nursing & Midwifery, Menzies Health Institute, Griffith University, Queensland, Australia

    University of Southern Denmark, Denmark

    Family Focused Healthcare Research Center (FaCe), Department of Clinical Research, University of Southern Denmark, Denmark
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  • Natalie Winter
    Affiliations
    School of Nursing and Midwifery, Faculty of Health, Deakin University, Melbourne, Australia
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  • Joan Carlini
    Affiliations
    Griffith Business School, Menzies Health Institute Queensland, Australia
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  • Julia Robertson
    Affiliations
    Department of Oncology, Academy of Geriatric Cancer Research (AgeCare), Odense University Hospital, DK, 5000, Odense C, Denmark
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  • Karin Dieperink
    Affiliations
    School of Nursing & Midwifery, Menzies Health Institute, Griffith University, Queensland, Australia

    University of Southern Denmark, Denmark

    Department of Oncology, Academy of Geriatric Cancer Research (AgeCare), Odense University Hospital, DK, 5000, Odense C, Denmark

    Family Focused Healthcare Research Center (FaCe), Department of Clinical Research, University of Southern Denmark, Denmark
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Published:August 26, 2022DOI:https://doi.org/10.1016/j.ejon.2022.102187

      Highlights

      • Brain cancer diagnosis leads to complex challenges for the family to manage, such as personality changes and seizures.
      • Family provides most of the care and support after cancer diagnosis, yet they often struggle with understanding information.
      • Authentic video resources available via YouTube enable the person affected by cancer to access and understand information.
      • Co-design enables resources developed with the consumer for the consumer and improves consumer outcomes.

      Abstract

      Purpose

      Co-designed and accessible video resources improve an understanding of health information and can reduce unmet needs for caregivers of persons with brain cancer. This study developed and evaluated video resources that provide health information for persons caring for someone with brain cancer.

      Method

      A co-design approach with consumers was used to design, develop, and evaluate video resources.

      Results

      Twelve videos were designed with persons with brain cancer, caregivers, and health professionals. The video design and topics were informed by current literature. The videos were filmed with consumers to ensure authenticity. The evaluation was completed using data analytics and seven interviews with consumers. Content analysis identified four themes: needing information, authenticity, visual engagement, and key messages. The video length and presentation were important aspects to engage the caregiver, particularly when dealing with stress. The storage on YouTube enabled accessibility and various presentation formats met different learning styles.

      Conclusion

      The development of co-designed health information videos provided resources to improve caregivers understanding of the information provided by the health professionals. The videos were easy to access and able to be viewed at home with family.

      Keywords

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      References

        • Allison M.
        • Patterson J.
        • Burton S.
        • Patel D.
        • Brassil K.J.
        Digital engagement preferences of individuals aged 65 and older with cancer.
        J. Clin. Oncol. 2020; 38 (289-289)https://doi.org/10.1200/JCO.2020.38.29_suppl.289
        • Andersen N.I.
        • Nielsen C.I.
        • Danbjorg D.B.
        • Moller P.K.
        • Brochstedt K.D.
        Caregivers' need for support in an outpatient cancer setting.
        Oncol. Nurs. Forum. 2019; 46: 757-767https://doi.org/10.1188/19.ONF.757-767
        • Australian Government
        Australia National digital health Strategy.
        (Australian Government Retrieved Sept from)
        • Australian Healthcare and Hospitals Association (AHHA), & Consumers Forum of Australia (CHF)
        Experience based Co-design Toolkit.
        • Bamgboje-Ayodele A.
        • Smith A.B.
        • Short C.E.
        • Fardell J.E.
        • Shaw J.
        • Beatty L.
        • Higgins K.
        • Tutelman P.R.
        • Chambers C.T.
        • Girgis A.
        Barriers and facilitators to the availability of efficacious self-directed digital health tools for adults living with cancer and their caregivers: a systematic literature review and author survey study.
        Patient Educ. Counsel. 2021; 104: 2480-2489https://doi.org/10.1016/j.pec.2021.03.012
        • Bayen E.
        • Laigle-Donadey F.
        • Prouté M.
        • Hoang-Xuan K.
        • Joël M.
        • Delattre J.
        The multidimensional burden of informal caregivers in primary malignant brain tumor.
        Support. Care Cancer. 2017; 25: 245-253https://doi.org/10.1007/s00520-016-3397-6
        • Beatty L.
        • Beatty L.
        • Kemp E.
        • Kemp E.
        • Coll J.R.
        • Coll J.R.
        • Turner J.
        • Turner J.
        • Butow P.
        • Butow P.
        • Milne D.
        • Milne D.
        • Yates P.
        • Yates P.
        • Lambert S.
        • Lambert S.
        • Wootten A.
        • Wootten A.
        • Yip D.
        • Koczwara B.
        Finding My Way: results of a multicentre RCT evaluating a web-based self-guided psychosocial intervention for newly diagnosed cancer survivors.
        Support. Care Cancer. 2019; 27: 2533-2544https://doi.org/10.1007/s00520-018-4526-1
        • Bird M.
        • McGillion M.
        • Chambers E.M.
        • Dix J.
        • Fajardo C.J.
        • Gilmour M.
        • Levesque K.
        • Lim A.
        • Mierdel S.
        • Ouellette C.
        • Polanski A.N.
        • Reaume S.V.
        • Whitmore C.
        • Carter N.
        A generative co-design framework for healthcare innovation: development and application of an end-user engagement framework.
        Res. Involv. Engagem. 2021; 7 (12-12)https://doi.org/10.1186/s40900-021-00252-7
        • Boele F.W.
        • Rooney A.G.
        • Bulbeck H.
        • Sherwood P.
        Interventions to help support caregivers of people with a brain or spinal cord tumour.
        Cochrane Database Syst. Rev. 2019; 7 (CD012582-CD012582)https://doi.org/10.1002/14651858.CD012582.pub2
        • Chan R.J.
        • Gordon L.G.
        • Tan C.J.
        • Chan A.
        • Bradford N.K.
        • Yates P.
        • Agbejule O.A.
        • Miaskowski C.
        Relationships between financial toxicity and symptom burden in cancer survivors: a systematic review.
        J. Pain Symptom Manag. 2019; 57 (e641): 646-660https://doi.org/10.1016/j.jpainsymman.2018.12.003
        • Coyne E.
        • Calleja P.
        • Forster E.
        • Lin F.
        A review of virtual-simulation for assessing healthcare students' clinical competency.
        Nurse Educ. Today. 2021; 96104623https://doi.org/10.1016/j.nedt.2020.104623
        • Coyne E.
        • Dieperink K.B.
        • Østergaard B.
        • Creedy D.K.
        Strengths and resources used by Australian and Danish adult patients and their family caregivers during treatment for cancer.
        Eur. J. Oncol. Nurs. 2017; 29: 53-59https://doi.org/10.1016/j.ejon.2017.05.005
        • Coyne E.
        • Frommolt V.
        • Rands H.
        • Kain V.
        • Mitchell M.
        Simulation videos presented in a blended learning platform to improve Australian nursing students' knowledge of family assessment.
        Nurse Educ. Today. 2018; 66: 96-102https://doi.org/10.1016/j.nedt.2018.04.012
        • Coyne E.
        • Rands H.
        • Frommolt V.
        • Kain V.
        • Plugge M.
        • Mitchell M.
        Investigation of blended learning video resources to teach health students clinical skills: an integrative review.
        Nurse Educ. Today. 2018; 63: 101-107https://doi.org/10.1016/j.nedt.2018.01.021
        • Coyne E.
        • Frommolt V.
        • Salehi A.
        The experience and challenges of rural persons with cancer and their families.
        Collegian. 2019; 26: 609-619https://doi.org/10.1016/j.colegn.2019.10.002
        • Coyne E.
        • Heynsbergh N.
        • Dieperink K.B.
        Acknowledging cancer as a family disease: a systematic review of family care in the cancer setting.
        Eur. J. Oncol. Nurs. 2020; 49101841https://doi.org/10.1016/j.ejon.2020.101841
        • Dionne-Odom J.N.
        • Williams G.R.
        • Warren P.P.
        • Tims S.
        • Huang C.-H.S.
        • Taylor R.A.
        • Ledbetter L.
        • Lever T.
        • Mitchell K.
        • Thompson M.
        • Dosse C.
        • Engler S.
        • Holmes A.
        • Connelley B.
        • Hicks J.
        • Bakitas M.A.
        • Nabors B.
        • Tucker R.
        Implementing a clinic-based telehealth support service (Family Strong) for family caregivers of individuals with grade IV brain tumors.
        J. Palliat. Med. 2021; 24: 347-353https://doi.org/10.1089/jpm.2020.0178
        • Elwyn G.
        • Nelson E.
        • Hager A.
        • Price A.
        Coproduction: when users define quality.
        BMJ Qual. Saf. 2020; 29: 711https://doi.org/10.1136/bmjqs-2019-009830
        • Geng H.-m.
        • Chuang D.-m.
        • Yang F.
        • Yang Y.
        • Liu W.-m.
        • Liu L.-h.
        • Tian H.-m.
        Prevalence and determinants of depression in caregivers of cancer patients: a systematic review and meta-analysis.
        Medicine (Baltim.). 2018; 97 (e11863-e11863)https://doi.org/10.1097/MD.0000000000011863
        • Gilliss C.L.
        • Pan W.
        • Davis L.L.
        Family involvement in adult chronic disease care: reviewing the systematic reviews.
        J. Fam. Nurs. 2019; 25: 3-27https://doi.org/10.1177/1074840718822365
        • Goldsmith J.V.
        • Wittenberg E.
        • Terui S.
        • Kim H.
        • Umi S.
        Providing support for caregiver communication burden: assessing the plain language planner resource as a nursing intervention.
        Semin. Oncol. Nurs. 2019; 35: 354-358https://doi.org/10.1016/j.soncn.2019.06.007
        • Green T.
        • Bonner A.
        • Teleni L.
        • Bradford N.
        • Purtell L.
        • Douglas C.
        • Yates P.
        • MacAndrew M.
        • Dao H.Y.
        • Chan R.J.
        Use and reporting of experience-based codesign studies in the healthcare setting: a systematic review.
        BMJ Qual. Saf. 2020; 29: 64-76https://doi.org/10.1136/bmjqs-2019-009570
        • Halkett G.
        • Lobb E.A.
        • Shaw T.
        • Sinclair M.M.
        • Miller L.
        • Hovey E.
        • Nowak A.K.
        Do carer's levels of unmet needs change over time when caring for patients diagnosed with high-grade glioma and how are these needs correlated with distress?.
        Support. Care Cancer. 2018; 26: 275-286https://doi.org/10.1007/s00520-017-3846-x
        • Halkett G.K.
        • Lobb E.A.
        • Oldham L.
        • Nowak A.K.
        The information and support needs of patients diagnosed with High Grade Glioma.
        Patient Educ. Counsel. 2010; 79: 112-119https://doi.org/10.1016/j.pec.2009.08.013
        • Heckel M.
        • Hoser B.
        • Stiel S.
        Caring for patients with brain tumors compared to patients with non-brain tumors: experiences and needs of informal caregivers in home care settings.
        J. Psychosoc. Oncol. 2018; 36: 189-202https://doi.org/10.1080/07347332.2017.1379046
        • Heynsbergh N.
        • Heckel L.
        • Botti M.
        • Livingston P.M.
        Feasibility, useability and acceptability of technology-based interventions for informal cancer carers: a systematic review [journal article].
        BMC Cancer. 2018; 18: 244https://doi.org/10.1186/s12885-018-4160-9
        • Hyatt A.
        • Morkunas B.
        • Davey D.
        • Thai A.A.
        • Trewhella M.
        • Duffy M.
        • Dawson T.
        • Gourlay P.
        • Hutchison J.
        • Milne D.
        Co-design and development of online video resources about immunotherapy with patients and their family.
        Patient Educ. Counsel. 2021; 104: 290-297https://doi.org/10.1016/j.pec.2020.09.014
        • Jeon M.S.
        • Agar M.R.
        • Koh E.-S.
        • Nowak A.K.
        • Hovey E.J.
        • Dhillon H.M.
        Barriers to managing sleep disturbance in people with malignant brain tumours and their caregivers: a qualitative analysis of healthcare professionals' perception.
        Support. Care Cancer. 2021; 29: 3865-3876https://doi.org/10.1007/s00520-020-05970-4
        • Kim H.
        • Xie B.
        Health literacy in the eHealth era: a systematic review of the literature.
        Patient Educ. Counsel. 2017; 100: 1073-1082https://doi.org/10.1016/j.pec.2017.01.015
        • Lortz J.
        • Simanovski J.
        • Kuether T.
        • Kreitschmann-Andermahr I.
        • Ullrich G.
        • Steinmetz M.
        • Rammos C.
        • Jánosi R.A.
        • Moebus S.
        • Rassaf T.
        • Paldán K.
        Needs and requirements in the designing of mobile interventions for patients with peripheral arterial disease: questionnaire study.
        JMIR Formative Res. 2020; 4 (e15669-e15669)https://doi.org/10.2196/15669
        • Macfarlane J.
        Positive psychology: gratitude and its role within mental health nursing.
        British J. Mental Health Nurs. 2020; 9: 19-30https://doi.org/10.12968/bjmh.2019.0040
        • Marthick M.
        • McGregor D.
        • Alison J.
        • Cheema B.
        • Dhillon H.
        • Shaw T.
        Supportive care interventions for people with cancer assisted by digital technology: systematic review.
        J. Med. Internet Res. 2021; https://doi.org/10.2196/24722
        • Milley K.
        • Chima S.
        • McIntosh J.G.
        • Ackland E.
        • Emery J.D.
        Long-term consumer involvement in cancer research: working towards partnership.
        Health Expect. 2021; (n/a(n/a))https://doi.org/10.1111/hex.13258
        • Monton O.
        • Lambert S.
        • Belzile E.
        • Mohr-Elzeki D.
        An evaluation of the suitability, readability, quality, and usefulness of online resources for family caregivers of patients with cancer.
        Patient Educ. Counsel. 2019; 102: 1892-1897https://doi.org/10.1016/j.pec.2019.05.010
        • Moore C.
        • Hassett D.
        • Dunne S.
        Health literacy in cancer caregivers: a systematic review.
        J. Canc. Survivorship. 2021; https://doi.org/10.1007/s11764-020-00975-8
        • Nordentoft S.
        • Dieperink K.B.
        • Johansson S.D.
        • Jarden M.
        • Piil K.
        Evaluation of a multimodal rehabilitative palliative care programme for patients with high-grade glioma and their family caregivers.
        Scand. J. Caring Sci. 2021; (n/a(n/a))https://doi.org/10.1111/scs.13019
        • Oliveira D.
        • Sousa L.
        • Sousa L.
        • Orrell M.
        Improving health-promoting self-care in family carers of people with dementia: a review of interventions.
        Clin. Interv. Aging. 2019; 14: 515-523https://doi.org/10.2147/CIA.S190610
        • Ostervang C.
        • Vestergaard L.V.
        • Dieperink K.B.
        • Danbjorg D.B.
        The use of video-consulted patient rounds with relatives-possibilities and barriers in clinical practice: qualitative study.
        J. Med. Internet Res. 2019; 21https://doi.org/10.2196/12584
        • Ownsworth T.
        • Chan R.J.
        • Jones S.
        • Robertson J.
        • Pinkham M.B.
        Use of telehealth platforms for delivering supportive care to adults with primary brain tumors and their family caregivers: a systematic review.
        Psycho Oncol. 2021; 30: 16-26https://doi.org/10.1002/pon.5549
        • Parvataneni R.
        • Polley M.-Y.
        • Freeman T.
        • Lamborn K.
        • Prados M.
        • Butowski N.
        • Liu R.
        • Clarke J.
        • Page M.
        • Rabbitt J.
        • Fedoroff A.
        • Clow E.
        • Hsieh E.
        • Kivett V.
        • DeBoer R.
        • Chang S.
        Identifying the needs of brain tumor patients and their caregivers.
        J. Neuro Oncol. 2011; 104: 737-744https://doi.org/10.1007/s11060-011-0534-4
        • Pera R.
        • Viglia G.
        Exploring how video digital storytelling builds relationship experiences.
        Psychol. Market. 2016; 33: 1142-1150https://doi.org/10.1002/mar.20951
        • Petersson N.B.
        • Løvendahl A.J.
        • Danbjørg D.B.
        • Dieperink K.B.
        Video-consulted rounds with caregivers: the experience of patients with cancer.
        Eur. J. Oncol. Nurs. 2020; 101763https://doi.org/10.1016/j.ejon.2020.101763
        • Piil K.
        • Jakobsen J.
        • Christensen K.B.
        • Juhler M.
        • Guetterman T.C.
        • Fetters M.D.
        • Jarden M.
        Needs and preferences among patients with high-grade glioma and their caregivers - a longitudinal mixed methods study.
        Eur. J. Cancer Care. 2018; 27e12806https://doi.org/10.1111/ecc.12806
        • Prior S.J.
        • Mather C.
        • Ford K.
        • Bywaters D.
        • Campbell S.
        Person-centred data collection methods to embed the authentic voice of people who experience health challenges.
        BMJ Open Qual. 2020; 9e000912https://doi.org/10.1136/bmjoq-2020-000912
        • Putranto D.
        • Rochmawati E.
        Mobile applications for managing symptoms of patients with cancer at home: a scoping review.
        Int. J. Nurs. Pract. 2020; 26 (n/a)e12842https://doi.org/10.1111/ijn.12842
        • Rathnayake S.
        Co-design of an mHealth Application for Family Carers of People with Dementia to Address Needs Related to the Functional Disability of Their Care Recipients.
        Griffith University, 2020 (Publication Number Dissertation/Thesis)
        • Smith A.B.
        • Bamgboje-Ayodele A.
        • Butow P.
        • Klein B.
        • Turner J.
        • Sharpe L.
        • Fardell J.
        • Beatty L.
        • Pearce A.
        • Thewes B.
        • Beith J.
        • iConquerFear Community Advisory, G., & Girgis, A
        Development and usability evaluation of an online self-management intervention for fear of cancer recurrence (iConquerFear).
        Psycho Oncol. 2020; 29: 98-106https://doi.org/10.1002/pon.5218
        • Todorovic M.
        • Coyne E.
        • Gopalan V.
        • Oh Y.
        • Landowski L.
        • Barton M.
        Twelve tips for using Facebook as a learning platform.
        Med. Teach. 2020; : 1-13https://doi.org/10.1080/0142159X.2020.1854708
        • Tuong W.
        • Larsen E.R.
        • Armstrong A.W.
        Videos to influence: a systematic review of effectiveness of video-based education in modifying health behaviors.
        J. Behav. Med. 2014; 37: 218-233https://doi.org/10.1007/s10865-012-9480-7
        • Ugalde A.
        • Winter N.
        • Sansom-Daly U.
        • Rhee J.
        • Jongebloed H.
        • Bergin R.
        • Livingston P.
        Effective integration of caregivers and families as part of the care team for people with cancer.
        Aust. J. General Pract. 2021; 50: 527-531
        • Vaismoradi M.
        • Turunen H.
        • Bondas T.
        Content analysis and thematic analysis: implications for conducting a qualitative descriptive study.
        Nurs. Health Sci. 2013; 15: 398-405https://doi.org/10.1111/nhs.12048
        • van der Heide I.
        • Poureslami I.
        • Mitic W.
        • Shum J.
        • Rootman I.
        • FitzGerald J.M.
        Health literacy in chronic disease management: a matter of interaction.
        J. Clin. Epidemiol. 2018; 102: 134-138https://doi.org/10.1016/j.jclinepi.2018.05.010
        • Vedelø T.W.
        • Sørensen J.C.H.
        • Delmar C.
        Patients' experiences and care needs during the diagnostic phase of an integrated brain cancer pathway: a case study.
        J. Clin. Nurs. 2018; 27: 3044-3055https://doi.org/10.1111/jocn.14372
        • Voisin M.R.
        • Oliver K.
        • Farrimond S.
        • Chee T.
        • Arzbaecher J.
        • Kruchko C.
        • Maher M.E.
        • Tse C.
        • Cashman R.
        • Daniels M.
        • Mungoshi C.
        • Lamb S.
        • Granero A.
        • Lovely M.
        • Baker J.
        • Payne S.
        • Zadeh G.
        Brain tumors and COVID-19: the patient and caregiver experience.
        Neurooncol. Adv. 2020; 2 (vdaa104)https://doi.org/10.1093/noajnl/vdaa104
        • World Health Organisation
        Global Strategy on Digital Health 2020-2025.
        World Health Organisation, 2020
        • Wright K.M.
        • Simpson G.K.
        • Koh E.S.
        • Whiting D.L.
        • Gillett L.
        • Simpson T.
        • Firth R.
        Development and evaluation of information resources for patients, families, and healthcare providers addressing behavioral and cognitive sequelae among adults with a primary brain tumor.
        J. Neurosci. Nurs. 2015; 47: 135-145https://doi.org/10.1097/jnn.0000000000000132
        • Wright L.M.
        • Leahey M.
        • ProQuest
        Nurses and Families: a Guide to Family Assessment and Intervention. 6. F.A. Davis Company, 2013 (6.;6th)
        • Wynn J.
        • Wei W.
        • Li X.
        • So Y.S.
        • Bakken S.
        • Weng C.
        • Chung W.K.
        User engagement with web-based genomics education videos and implications for designing scalable patient education materials.
        in: AMIA . Annual Symposium Proceedings, 2019. 2019: 923-932
        • YouTube
        YouTube analytics.
        (Retrieved Feb from)