{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,6,30]],"date-time":"2026-06-30T03:31:13Z","timestamp":1782790273909,"version":"3.54.5"},"reference-count":56,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2018,6,9]],"date-time":"2018-06-09T00:00:00Z","timestamp":1528502400000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/onlinelibrary.wiley.com\/termsAndConditions#vor"}],"content-domain":{"domain":["bpspsychub.onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["British J Health Psychol"],"published-print":{"date-parts":[[2018,9]]},"abstract":"<jats:sec>\n                    <jats:title>Objectives<\/jats:title>\n                    <jats:p>This study aimed to explore how parents communicate with children affected by sickle cell disease, a condition associated with social and cultural complexities that pose risks to open parent\u2013child communication.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Design<\/jats:title>\n                    <jats:p>A contextualist approach informed the qualitative exploration of parent experience using an individual interview design.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Methods<\/jats:title>\n                    <jats:p>Twelve semi\u2010structured interviews were conducted with parents whose child had a diagnosis of sickle cell disease. Interviews were audio\u2010recorded, transcribed verbatim, and analysed using inductive thematic analysis.<\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Results<\/jats:title>\n                    <jats:p>\n                      Parental communication was aimed at educating and protecting children from the physical and emotional effects of\n                      <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                      in an age appropriate way. Parents commonly described avoidant communication and a small number described using this as a more predominant approach. This appeared to relate to fears about\n                      <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                      , stigma, and uncertainty about how to best to respond.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:title>Conclusions<\/jats:title>\n                    <jats:p>\n                      As a known mediator of child outcomes, communication offers a promising target for intervention. The findings of this study suggest that parents of children with\n                      <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                      are likely to benefit from formal support to adapt their communication to their child's needs. Parenting interventions should, in future, include the\n                      <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                      parent population as a specific group to benefit child outcomes.\n                    <\/jats:p>\n                  <\/jats:sec>\n                  <jats:sec>\n                    <jats:label\/>\n                    <jats:p>\n                      <jats:boxed-text content-type=\"box\" position=\"anchor\">\n                        <jats:caption>\n                          <jats:title>Statement of contribution<\/jats:title>\n                        <\/jats:caption>\n                        <jats:p>\n                          <jats:italic>\n                            <jats:bold>What is already known on this subject?<\/jats:bold>\n                          <\/jats:italic>\n                        <\/jats:p>\n                        <jats:p>\n                          <jats:list list-type=\"bullet\">\n                            <jats:list-item>\n                              <jats:p>\n                                Talking openly with children who have genetic conditions is known to promote acceptance and adjustment to illness. Sickle cell disease (\n                                <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                                ) is a genetic condition that is surrounded by various sociocultural issues that may act as barriers to parent\u2013child communication. For example, it is condition that affects only Black and Minority Ethnic (\n                                <jats:styled-content style=\"fixed-case\">BME<\/jats:styled-content>\n                                ) groups and is associated with longstanding stigma within\n                                <jats:styled-content style=\"fixed-case\">BME<\/jats:styled-content>\n                                communities due to the hereditary nature of the disease.\n                              <\/jats:p>\n                            <\/jats:list-item>\n                          <\/jats:list>\n                        <\/jats:p>\n                        <jats:p>\n                          <jats:italic>\n                            <jats:bold>What does this study add?<\/jats:bold>\n                          <\/jats:italic>\n                        <\/jats:p>\n                        <jats:p>\n                          <jats:list list-type=\"bullet\">\n                            <jats:list-item>\n                              <jats:p>\n                                It adds a unique focus on communication in the\n                                <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                                parent population (previous work has tended to study this group alongside parents of various other genetic conditions).\n                              <\/jats:p>\n                            <\/jats:list-item>\n                            <jats:list-item>\n                              <jats:p>\n                                The findings provide a rich insight into parent experience of communication with children about\n                                <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                                .\n                              <\/jats:p>\n                            <\/jats:list-item>\n                            <jats:list-item>\n                              <jats:p>It reveals that many parents find it difficult to talk openly with children and often avoid sensitive issues such as inheritance, physical limitations, and risk of death which has important implications for child coping and adjustment.<\/jats:p>\n                            <\/jats:list-item>\n                            <jats:list-item>\n                              <jats:p>\n                                It is therefore recommended that health care services are designed to support parents with communication about\n                                <jats:styled-content style=\"fixed-case\">SCD<\/jats:styled-content>\n                                with their child.\n                              <\/jats:p>\n                            <\/jats:list-item>\n                          <\/jats:list>\n                        <\/jats:p>\n                      <\/jats:boxed-text>\n                    <\/jats:p>\n                  <\/jats:sec>","DOI":"10.1111\/bjhp.12311","type":"journal-article","created":{"date-parts":[[2018,6,9]],"date-time":"2018-06-09T03:24:58Z","timestamp":1528514698000},"page":"685-700","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":13,"title":["Communication with children about sickle cell disease: A qualitative study of parent experience"],"prefix":"10.1111","volume":"23","author":[{"given":"Joanne","family":"Middleton","sequence":"first","affiliation":[{"name":"Department of Healthcare Psychology Airedale General Hospital West Yorkshire UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rachel","family":"Calam","sequence":"additional","affiliation":[{"name":"Division of Psychology and Mental Health The University of Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0003-3590-6542","authenticated-orcid":false,"given":"Fiona","family":"Ulph","sequence":"additional","affiliation":[{"name":"Division of Psychology and Mental Health The University of Manchester UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2018,6,9]]},"reference":[{"key":"e_1_2_7_2_1","doi-asserted-by":"publisher","DOI":"10.1177\/0038038597031003015"},{"key":"e_1_2_7_3_1","doi-asserted-by":"publisher","DOI":"10.1007\/s11920-007-0080-0"},{"key":"e_1_2_7_4_1","first-page":"650","article-title":"Defensive processes in the light of attachment theory. 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