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Research Article

“Have We Done Enough?” A Cross-condition Exploration of the Experiences of Parents Caring for A Child with an Appearance-affecting Condition or Injury

ORCID Icon, ORCID Icon, ORCID Icon, ORCID Icon & ORCID Icon
Pages 418-428 | Received 11 Aug 2020, Accepted 05 Mar 2021, Published online: 14 Apr 2021

References

  • Rumsey N, Harcourt D. Body image and disfigurement: issues and interventions. Body Image. 2004;1(1):83–97. doi:10.1016/S1740-1445(03)00005-6.
  • Changing Faces. Changing Faces » Statistics [Internet]. 2010 [ accessed 2020 August 07]. Available from: https://www.changingfaces.org.uk/education/health/patient-needs/statistics
  • Swami V. Physical attractiveness and personality. In: Cash TF. Encyclopedia of body image and human appearance. Elsevier: Oxford; 2012. p. 622–8.
  • Jenkinson E, Williamson H, Byron-Daniel J, Moss TP. Systematic Review: psychosocial Interventions for Children and Young People With Visible Differences Resulting From Appearance Altering Conditions, Injury, or Treatment Effects. J Pediatr Psychol. 2015;40(10):1017–33. doi:10.1093/jpepsy/jsv048.
  • Eiserman W. Unique Outcomes and Positive Contributions Associated with Facial Difference: expanding Research and Practice. Cleft Palate-Craniofacial J. 2001;38(3):236–44. doi:10.1597/1545-1569_2001_038_0236_uoapca_2.0.co_2.
  • Klein T, Pope AW, Getahun E, Thompson J. Mothers’ reflections on raising a child with a craniofacial anomaly. Cleft Palate-Craniofacial Journal. 2006;43(5):590–97. doi:10.1597/05-117.
  • Stock NM, Rumsey N. Parenting a Child with a Cleft: the Father’s Perspective. Cleft Palate-Craniofacial Journal. 2015;52(1):31–43. doi:10.1597/13-035.
  • Heath J, Williamson H, Williams L, Harcourt D. Parent-perceived isolation and barriers to psychosocial support: a qualitative study to investigate how peer support might help parents of burn-injured children. Scars, Burn Healing. 2018;4:1–12. doi:10.1177/2059513118763801.
  • Hawkins L, Centifanti LCM, Holman N, Taylor P. Parental Adjustment following Pediatric Burn Injury: the role of guilt, shame, and self-compassion. J Pediatr Psychol. 2019;44(2):229–37. doi:10.1093/jpepsy/jsy079.
  • Nelson J, O’Leary C, Weinman J. Causal Attributions in Parents of Babies with a Cleft Lip and/or Palate and Their Association with Psychological Well-Being. Cleft Palate-Craniofacial J. 2009;46(4):425–34. doi:10.1597/07-194.1.
  • Horridge G, Cohen K, BurnEd GS. Parental, psychological and social factors influencing a burn-injured child’s return to education. Burns. 2010;36(5):630–38. doi:10.1016/j.burns.2009.08.013.
  • Bandura A, McClelland DC. Social learning theory. 1977 Oct. Prentice Hall: Englewood cliffs. 
  • Colletti CJM, Wolfe-Christensen C, Carpentier MY, Page MC, McNall-Knapp RY, Meyer WH, Chaney, JM, Mullins, LL. The relationship of parental overprotection, perceived vulnerability, and parenting stress to behavioral, emotional, and social adjustment in children with cancer. Pediatr Blood Cancer. 2008;51(2):269–74. doi:10.1002/pbc.21577.
  • Thomasgard M, Metz WP, Edelbrock C, Shonkoff JP. Parent-child relationship disorders. part i. parental overprotection and the development of the parent protection scale. J Dev Behav Pediatr. 1995;16(4):244–50. doi:10.1097/00004703-199508000-00006.
  • Holmbeck GN, Johnson SZ, Wills KE, McKernon W, Rose B, Erklin S, Kemper T. Observed and perceived parental overprotection in relation to psychosocial adjustment in preadolescents with a physical disability: the mediational role of behavioral autonomy. J Consult Clin Psychol. 2002;70(1):96–110. doi:10.1037/0022-006X.70.1.96.
  • Phillips C, Fussell A, Rumsey N. Considerations for psychosocial support following burn injury—A family perspective. Burns. 2007;33(8):986–94. doi:10.1016/j.burns.2007.01.010.
  • Stock NM, Stoneman K, Cunniffe C, Rumsey N. the psychosocial impact of cleft lip and/or palate on unaffected Siblings. Cleft Palate-Craniofacial J. 2016;53(6):670–82. doi:10.1597/15-148.
  • Gee C, Maskell J, Newcombe P, Kimble R, Williamson H. Opening a Pandora’s Box that can’t be salvaged: health professionals’ perceptions of appearance-related care in an Australian pediatric specialist hospital. Body Image. 2019;31:1–12. doi:10.1016/j.bodyim.2019.07.004.
  • Stock NM, Zucchelli F, Hudson N, Kiff JD, Hammond V. Promoting psychosocial adjustment in individuals born with cleft lip and/or palate and their families: current clinical practice in the United Kingdom. Cleft Palate-Craniofacial J. 2019;57(2):186–97. doi:10.1177/1055665619868331.
  • Houston S. Beyond social constructionism: critical realism and social work. Br J Soc Work. 2001;31(6):845–61. doi:10.1093/bjsw/31.6.845.
  • Williams SJ. Is anybody there? Critical realism, chronic illness and the disability debate. Sociol Heal Illn. 1999;21(6):797–819. doi:10.1111/1467-9566.00184.
  • DiCicco-Bloom B, Crabtree BF. The qualitative research interview. Med Educ. 2006;40(4):314–21. doi:10.1111/j.1365-2929.2006.02418.x.
  • Lambert SD, Loiselle CG. Combining individual interviews and focus groups to enhance data richness. J Adv Nurs. 2008;62(2):228–37. doi:10.1111/j.1365-2648.2007.04559.x.
  • Etikan I, Musa SA, Alkassim RS. Comparison of convenience sampling and purposive sampling. Am J Theor Appl Stat. 2016;5(1):1. doi:10.11648/j.ajtas.20160501.11.
  • Stock NM, Costa B, Foundation Research VTCT. Team at the centre for appearance research. Provision of care for families affected by craniofacial conditions: the views of nonspecialist health professionals. The Cleft Palate-Craniofacial Journal. 2020;57(4):470–76. doi:10.1177/1055665619883151.
  • Braun V, Clarke V. Successful qualitative research: a practical guide for beginners. Sage; London. 2013.
  • Sandelowski M. Triangles and crystals: on the geometry of qualitative research. Research in nursing & health. 1995;18(6):569–74.doi:10.1002/nur.4770180612.
  • Hall E, Saxe G, Stoddard F, Kaplow J, Koenen K, Chawla N, Lopez C, King L, King D. Posttraumatic stress symptoms in parents of children with acute burns. J Pediatr. 2006;31(4):403–12. doi:10.1093/jpepsy/jsj016.
  • Heath J, Williamson H, Williams L, Harcourt D. “It’s just more personal”: using multiple methods of qualitative data collection to facilitate participation in research focusing on sensitive subjects. Applied Nursing Research. 2018;34:30–35. doi:10.1016/j.apnr.2018.06.015.
  • Brooks J, McCluskey S, Turley E, King N. The utility of template analysis in qualitative psychology research. Qual Res Psych. 2015;12(2):202–22. doi:10.1080/14780887.2014.955224.
  • Willig C, Stainton Rogers W. The SAGE handbook of qualitative research in psychology. SAGE Publications; London. 2008.
  • Farmer T, Robinson K, Elliott SJ, Eyles J. Developing and implementing a triangulation protocol for qualitative health research. Qual Health Res. 2006;16(3):377–94. doi:10.1177/1049732305285708.
  • Tracy SJ. Qualitative quality: eight a”big-tent” criteria for excellent qualitative research. Qual Inq. 2010;16(10):837–51. doi:10.1177/1049732305285708.
  • Meyrick J. What is good qualitative research? J Health Psychol. 2006;11(5):799–808. doi:10.1177/1359105306066643.
  • Owens J. Parents’ experiences of feeding a baby with cleft lip and palate. British Journal of Midwifery. 2008;16(12):778–84. doi:10.12968/bjom.2008.16.12.31819.
  • Oliver J, Dixon C, Murray CD. Being the parent of a child with limb difference who has been provided with an artificial limb: an interpretative phenomenological analysis. Disabil Rehabil. 2020;42(14):1979–86. doi:10.1080/09638288.2018.1543462.
  • Costa B, Williams JR, Martindale A, Stock NM. Team TVFR. Parents’ experiences of diagnosis and care following the birth of a child with cleft lip and/or palate. Br J Midwifery. 2019;27(3):151–60. doi:10.12968/bjom.2019.27.3.151.
  • Nelson P, Glenny AM, Kirk S, Caress AL Parents’ experiences of caring for a child with a cleft lip and/or palate: a review of the literature. Child: Care, Health and Development. 2012;38: 6–20. doi:10.1111/j.1365-2214.2011.01244.x
  • Gouveia MJ, Carona C, Canavarro MC, Moreira H. Self-compassion and dispositional mindfulness are associated with parenting styles and parenting stress: the mediating role of mindful parenting. Mindfulness. 2016;7(3):700–12. doi:10.1007/s12671-016-0507-y.
  • Cash TF, Melnyk SE, Hrabosky JI. The assessment of body image investment: an extensive revision of the appearance schemas inventory. International Journal of Eating Disorders. 2019;35(3):305–16.
  • Thompson J, Heinberg L, Altabe M, Tantleff-Dunn S Exacting beauty: theory, assessment, and treatment of body image disturbance; 1999. doi:10.1037/10312-000
  • Abraczinskas M, Fisak B, Barnes RD. The relation between parental influence, body image, and eating behaviors in a nonclinical female sample. Body Image. 2012;9(1):93–100. doi:10.1016/j.bodyim.2011.10.005.
  • Ata RN, Ludden AB, Lally MM. The effects of gender and family, friend, and media influences on eating behaviors and body image during adolescence. J Youth Adolesc. 2007;36(8):1024–37. doi:10.1007/s10964-006-9159-x.
  • Diedrichs PC, Atkinson MJ, Garbett KM, Williamson H, Halliwell E, Rumsey N, Leckie G, Sibley CG, Barlow FK. Randomized controlled trial of an online mother-daughter body image and well-being intervention. Heal Psychol. 2016;35(9):996–1006. doi:10.1037/hea0000361.
  • Emerson LM, Bögels S. A systemic approach to pediatric chronic health conditions: why we need to address parental stress. J Child Fam Stud. 2017;26(9):2347–48. doi:10.1007/s10826-017-0831-4.
  • Wood BL, Lim J, Miller BD, Cheah PA, Simmens S, Stern T, Waxmonsky J, Ballow M. Family emotional climate, depression, emotional triggering of asthma, and disease severity in pediatric asthma: examination of pathways of effect. J Pediatr Psychol. 2007;32(5):542–51. doi:10.1093/jpepsy/jsl044.
  • Chernoff RG, Ireys HT, DeVet KA, Kim YJ. A randomized, controlled trial of a community-based support program for families of children with chronic illness: pediatric outcomes. Arch Pediatr Adolesc Med. 2002;156(6):533–39. doi:10.1001/archpedi.156.6.533.
  • Dohnt HK, Tiggemann M. Body image concerns in young girls: the role of peers and media prior to adolescence. J Youth Adolesc. 2006;35(2):141–51. doi:10.1007/s10964-005-9020-7.
  • Ricciardelli LA, McCabe MP, Banfield S. Body image and body change methods in adolescent boys role of parents, friends, and the media. J Psychosom Res. 2000;49(3):189–97. doi:10.1016/S0022-3999(00)00159-8.
  • Benson BA, Gross AM, Messer SC, Kellum G, Passmore LA. Social support networks among families of children with craniofacial anomalies. Health Psychol. 1991;10(4):252–58. doi:10.1037/0278-6133.10.4.252.
  • Mancuso MG, Bishop S, Blakeney P, Robert R, Gaa J. Impact on the family: psychosocial adjustment of siblings of children who survive serious burns. J Burn Care Rehabil. 2003;24(2):110–18. doi:10.1097/00004630-200303000-00010.
  • Billaud Feragen K, Myhre A, Stock NM “Exposed and vulnerable”: parent reports of their child’s experience of multidisciplinary craniofacial consultations. Cleft Palate-Craniofacial J. 2019;56( 9):1230–38. doi:10.1177/1055665619851650
  • Stock NM, Costa B, White P, Rumsey N. Risk and protective factors for psychological distress in families following a diagnosis of cleft lip and/or palate. Cleft Palate-Craniofacial J. 2020;57(1):88–98. doi:10.1177/1055665619862457.
  • Dures E, Almeida C, Caesley J, Peterson A, Ambler N, Morris M, Pollock J, Hewlett S. Patient preferences for psychological support in inflammatory arthritis: a multicentre survey. Ann Rheum Dis.2016;75(1):142–47. doi:10.1136/annrheumdis-2014-205636.
  • Muthukrishna M, Bell AV, Henrich J, Curtin CM, Gedranovich A, McInerney J, Thue B. Beyond western, educated, industrial, rich, and democratic (WEIRD) psychology: measuring and mapping scales of cultural and psychological distance. Psychol Sci. 2020;21:0956797620916782.