Person-centred information to parents in paediatric oncology (the PIFBO study): A study protocol of an ongoing RCT

Anders Ringnér, Maria Björk, Cecilia Olsson, Ulla Hällgren Graneheim, Anders Ringnér, Maria Björk, Cecilia Olsson, Ulla Hällgren Graneheim

Abstract

Background: Parents of children with cancer experience a demanding situation and often suffer from psychological problems such as stress. Trying to coping with the complex body of information about their child's disease is one factor that contributes to this stress. The aim of this study is to evaluate an intervention for person-centred information to parents of children with cancer that consists of four sessions with children's nurses trained in the intervention method.

Methods/design: This is a multi-centre RCT with two parallel arms and a 1:1 allocation ratio. The primary outcome is illness-related parental stress. Secondary outcomes are post-traumatic stress symptoms, anxiety, depression, satisfaction with information, expected and received knowledge, and experiences with health care providers. A process evaluation is performed to describe experiences and contextual factors. Data are collected using web questionnaires or paper forms according to the parents' preference, audio recording of the intervention sessions, and qualitative interviews with parents and the intervention nurses.

Discussion: Few studies have evaluated information interventions for parents of children with cancer using large multi-centre RCTs. This intervention is designed to be performed by regular staff children's nurses, which will facilitate implementation if the intervention proves to be effective.

Trial registration: Clinical trials NCT02332226 (December 11, 2014).

Keywords: Childhood cancer; Multi-centre study; Parents; Person-centred information; Process evaluation; Protocol; Randomized controlled trial.

References

    1. Pai AL, Greenley RN, Lewandowski A, Drotar D, Youngstrom E, Peterson CC. A meta-analytic review of the influence of pediatric cancer on parent and family functioning. J Fam Psychol. 2007;21(3):407–415. doi: 10.1037/0893-3200.21.3.407.
    1. Pöder U, Ljungman G, von Essen L. Posttraumatic stress disorder among parents of children on cancer treatment: A longitudinal study. Psychooncology. 2008;17(5):430–437. doi: 10.1002/pon.1263.
    1. Lindahl Norberg A, Boman KK. Parent distress in childhood cancer: A comparative evaluation of posttraumatic stress symptoms, depression and anxiety. Acta Oncol. 2008;47(2):267–274. doi: 10.1080/02841860701558773.
    1. Ringnér A, Jansson L, Graneheim UH. Professional caregivers’ perceptions of providing information to parents of children with cancer. J Pediatr Oncol Nurs. 2011;28(1):34–42. doi: 10.1177/1043454210377175.
    1. Kästel A, Enskär K, Björk O. Parents’ views on information in childhood cancer care. Eur J Oncol Nurs. 2010;15(4):290–295. doi: 10.1016/j.ejon.2010.10.007.
    1. Ringnér A, Jansson L, Graneheim UH. Parental experiences of information within pediatric oncology. J Pediatr Oncol Nurs. 2011;28(4):244–251. doi: 10.1177/1043454211409587.
    1. Pöder U, von Essen L. Perceptions of support among Swedish parents of children on cancer treatment: A prospective, longitudinal study. Eur J Cancer Care. 2009;18(4):350–357. doi: 10.1111/j.1365-2354.2008.00935.x.
    1. Kılıçarslan Törüner E, Akgün Çıtak E. Information-seeking behaviours and decision-making process of parents of children with cancer. Eur J Oncol Nurs. 2013;17(2):176–183. doi: 10.1016/j.ejon.2012.03.001.
    1. Enskär K, Hamrin E, Carlsson M, von Essen L. Swedish mothers and fathers of children with cancer: Perceptions of well-being, social life, and quality care. J Psychosoc Oncol. 2010;29(1):51–66. doi: 10.1080/07347332.2011.534026.
    1. Soanes L, Hargrave D, Smith L, Gibson F. What are the experiences of the child with a brain tumour and their parents? Eur J Oncol Nurs. 2009;13(4):255–261. doi: 10.1016/j.ejon.2009.03.009.
    1. Flury M, Caflisch U, Ullmann-Bremi A, Spichiger E. Experiences of parents with caring for their child after a cancer diagnosis. J Pediatr Oncol Nurs. 2011;28(3):143–153. doi: 10.1177/1043454210378015.
    1. Lindahl Norberg A, Boman KK. Mothers and fathers of children with cancer: Loss of control during treatment and posttraumatic stress at later follow-up. Psychooncology. 2013;22(2):324–329.
    1. Söderbäck M, Coyne I, Harder M. The importance of including both a child perspective and the child’s perspective within health care settings to provide truly child-centred care. J Child Health Care. 2011;15(2):99–106. doi: 10.1177/1367493510397624.
    1. Mikkelsen G, Frederiksen K. Family-centred care of children in hospital – a concept analysis. J Adv Nurs. 2011;67(5):1152–1162. doi: 10.1111/j.1365-2648.2010.05574.x.
    1. Shields L. Questioning family-centred care. J Clin Nurs. 2010;19(17–18):2629–2638. doi: 10.1111/j.1365-2702.2010.03214.x.
    1. Zwaanswijk M, Tates K, Dulmen S, Hoogerbrugge PM, Kamps WA, Beishuizen A, et al. Communicating with child patients in pediatric oncology consultations: A vignette study on child patients’, parents’, and survivors’ communication preferences. Psychooncology. 2010;20(3):269–277. doi: 10.1002/pon.1721.
    1. McCormack B, McCance TV. Development of a framework for person-centred nursing. J Adv Nurs. 2006;56(5):472–479. doi: 10.1111/j.1365-2648.2006.04042.x.
    1. Ringnér A, Karlsson S, Hällgren Graneheim U. A person-centred intervention for providing information to parents of children with cancer. Experiences and effects. Eur J Oncol Nurs. 2015;19(3):318–324. doi: 10.1016/j.ejon.2014.10.012.
    1. Pai AL, Drotar D, Zebracki K, Moore M, Youngstrom E. A meta-analysis of the effects of psychological interventions in pediatric oncology on outcomes of psychological distress and adjustment. J Pediatr Psychol. 2006;31(9):978–988. doi: 10.1093/jpepsy/jsj109.
    1. Eccleston C, Palermo Tonya M, Fisher E, Law E: Psychological interventions for parents of children and adolescents with chronic illness. In: Cochrane Database of Systematic Reviews. Hoboken, NJ: John Wiley & Sons, Ltd; 2012
    1. Sahler OJZ, Fairclough DL, Phipps S, Mulhern RK, Dolgin MJ, Noll RB, et al. Using problem-solving skills training to reduce negative affectivity in mothers of children with newly diagnosed cancer: Report of a multisite randomized trial. J Consult Clin Psychol. 2005;73(2):272–283. doi: 10.1037/0022-006X.73.2.272.
    1. Kazak AE, Simms S, Alderfer MA, Rourke MT, Crump T, McClure K, et al. Feasibility and preliminary outcomes from a pilot study of a brief psychological intervention for families of children newly diagnosed with cancer. J Pediatr Psychol. 2005;30(8):644–655. doi: 10.1093/jpepsy/jsi051.
    1. Stehl ML, Kazak AE, Alderfer MA, Rodriguez A, Hwang W-T, Pai ALH, et al. Conducting a randomized clinical trial of an psychological intervention for parents/caregivers of children with cancer shortly after diagnosis. J Pediatr Psychol. 2009;34(8):803–816. doi: 10.1093/jpepsy/jsn130.
    1. Warner CM, Ludwig K, Sweeney C, Spillane C, Hogan L, Ryan J, et al. Treating persistent distress and anxiety in parents of children with cancer: An initial feasibility trial. J Pediatr Oncol Nurs. 2011;28(4):224–230. doi: 10.1177/1043454211408105.
    1. Peek G, Melnyk BM. Coping interventions for parents of children newly diagnosed with cancer: An evidence review with implications for clinical practice and future research. Pediatr Nurs. 2010;36(6):306–313.
    1. Hashemi F, Shokrpour N. The impact of education regarding the needs of pediatric leukemia patients’ siblings on the parents’ knowledge and practice. Health Care Manager. 2010;29(1):75–79. doi: 10.1097/HCM.0b013e3181cca479.
    1. Othman A, Blunden S, Mohamad N, Mohd Hussin ZA, Jamil Osman Z. Piloting a psycho-education program for parents of pediatric cancer patients in Malaysia. Psychooncology. 2010;19(3):326–331. doi: 10.1002/pon.1584.
    1. Donovan HS, Ward S. A representational approach to patient education. J Nurs Scholarsh. 2001;33(3):211–216. doi: 10.1111/j.1547-5069.2001.00211.x.
    1. Donovan HS, Ward SE, Song MK, Heidrich SM, Gunnarsdóttir S, Phillips CM. An update on the representational approach to patient education. J Nurs Scholarsh. 2007;39(3):259–265. doi: 10.1111/j.1547-5069.2007.00178.x.
    1. Björk M. Living with childhood cancer: Family members’ experiences and needs. Lund: Lunds Universitet; 2008.
    1. Streisand R, Braniecki S, Tercyak KP, Kazak AE. Childhood illness-related parenting stress: the pediatric inventory for parents. J Pediatr Psychol. 2001;26(3):155–162. doi: 10.1093/jpepsy/26.3.155.
    1. Weiss D, Marmar C. The Impact of Event Scale-Revised. In: Wilson J, Keane T, editors. Assessing Psychological Trauma and PTSD. New York: Guilford Press; 1997. pp. 399–411.
    1. Kreicbergs U, Valdimarsdóttir U, Onelöv E, Henter JI, Steineck G. Talking about death with children who have severe malignant disease. N Engl J Med. 2004;351(12):1175–1186. doi: 10.1056/NEJMoa040366.
    1. Leino-Kilpi H, Johansson K, Heikkinen K, Kaljonen A, Virtanen H, Salantera S. Patient education and health-related quality of life: surgical hospital patients as a case in point. J Nurs Care Qual. 2005;20(4):307–316. doi: 10.1097/00001786-200510000-00005.
    1. Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ 2015, 350(h1258). .
    1. Field A. Discovering statistics using SPSS : (and sex and drugs and rock 'n' roll) 3. Los Angeles; London: Sage; 2009.
    1. Graneheim UH, Lundman B. Qualitative content analysis in nursing research: Concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112. doi: 10.1016/j.nedt.2003.10.001.
    1. Enskär K, Björk M, Knutsson S, Granlund M, Darcy L, Huus K. A Swedish perspective on nursing and psychosocial research in paediatric oncology: A literature review. Eur J Oncol Nurs. 2015;19(3):310–317. doi: 10.1016/j.ejon.2014.10.013.
    1. Campbell NC, Murray E, Darbyshire J, Emery J, Farmer A, Griffiths F, et al. Designing and evaluating complex interventions to improve health care. BMJ. 2007;334(7591):455–459. doi: 10.1136/.
    1. Cousino MK, Hazen RA. Parenting stress among caregivers of children with chronic illness. A systematic review. J Pediatr Psychol. 2013;38(8):809–828. doi: 10.1093/jpepsy/jst049.

Source: PubMed

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