With improvements in diagnosis and care, children with HIV infection are living long enough to reach school age, a stage when they are capable of perceiving the stigmatizing, life-threatening nature of their illness. Many parents desire to protect them from this knowledge by avoiding an open dialogue about their disease, even though pediatric professionals advocate disclosure. Research-based guidelines about the risks and benefits of telling, however, have not been available in the literature. Using an innovative, qualitative approach through the use of grounded theory and projective drawing techniques, this investigation sought to explore what parents said about the illness and how children responded socially and emotionally. Data were obtained from 13 parents and 12 school age children with HIV. Although most of the children were informed about the illness by the time of the study, their drawings and conversations suggest they did not perceive that communication and support were available within their families. Instead, signs of social isolation, poor self-esteem, and severe emotional distress were found. The parents' readiness to tell determined the interval between diagnosis and disclosure, which was typically 4 years. These findings have implications for nursing practice, research, and education.
","abstract_html":"<p>With improvements in diagnosis and care, children with HIV infection are living long enough to reach school age, a stage when they are capable of perceiving the stigmatizing, life-threatening nature of their illness. Many parents desire to protect them from this knowledge by avoiding an open dialogue about their disease, even though pediatric professionals advocate disclosure. Research-based guidelines about the risks and benefits of telling, however, have not been available in the literature. Using an innovative, qualitative approach through the use of grounded theory and projective drawing techniques, this investigation sought to explore what parents said about the illness and how children responded socially and emotionally. Data were obtained from 13 parents and 12 school age children with HIV. Although most of the children were informed about the illness by the time of the study, their drawings and conversations suggest they did not perceive that communication and support were available within their families. Instead, signs of social isolation, poor self-esteem, and severe emotional distress were found. The parents' readiness to tell determined the interval between diagnosis and disclosure, which was typically 4 years. These findings have implications for nursing practice, research, and education.</p>","abstract_has_math":false,"creators":["Pease Instone, Susan, DNSc, MSN, CPNP"],"institution":null,"degree_name":"Doctor of Nursing Science","degree_level":"Dissertation: Open Access","degree_discipline":"Nursing","degree_department":null,"school":null,"contributors":[],"advisors":[],"committee_chairs":[],"committee_members":[],"year":1996,"date_issued":"1996-07-01T07:00:00Z","date_published":"1996-07-01T07:00:00Z","updated_at":"2026-07-24T05:40:42Z","subjects":["children & youth","families & family life","Human Immunodeficiency Virus--HIV","nursing","parents & parenting","Psychotherapy"],"languages":[],"rights":[],"rights_urls":[],"identifier_entries":[]},"links":{"outbound_url":"https://digital.sandiego.edu/dissertations/258","outbound_label":"Repository record","outbound_source":"dc:identifier"},"metadata_groups":[{"id":"people","label":"People","entries":[{"key":"dc:creator","label":"Author","values":["Pease Instone, Susan, DNSc, MSN, CPNP"]}]},{"id":"academic_context","label":"Academic Context","entries":[{"key":"dc:date.available","label":"Dc Date Available","values":["2021-06-28T07:00:00Z"]},{"key":"thesis:degree_discipline","label":"Discipline","values":["Nursing"]},{"key":"thesis:degree_level","label":"Degree Level","values":["Dissertation: Open Access"]},{"key":"thesis:degree_name","label":"Degree Name","values":["Doctor of Nursing Science"]}]},{"id":"subjects_keywords","label":"Subjects and Keywords","entries":[{"key":"dc:subject","label":"Dc Subject","values":["children & youth","families & family life","Human Immunodeficiency Virus--HIV","nursing","parents & parenting","Psychotherapy"]}]},{"id":"identifiers","label":"Identifiers","entries":[{"key":"dc:identifier","label":"Identifier","values":["https://digital.sandiego.edu/dissertations/258"]}]},{"id":"additional","label":"Additional Metadata","entries":[{"key":"dc:description.abstract","label":"Abstract","values":["With improvements in diagnosis and care, children with HIV infection are living long enough to reach school age, a stage when they are capable of perceiving the stigmatizing, life-threatening nature of their illness. Many parents desire to protect them from this knowledge by avoiding an open dialogue about their disease, even though pediatric professionals advocate disclosure. Research-based guidelines about the risks and benefits of telling, however, have not been available in the literature. Using an innovative, qualitative approach through the use of grounded theory and projective drawing techniques, this investigation sought to explore what parents said about the illness and how children responded socially and emotionally. Data were obtained from 13 parents and 12 school age children with HIV. Although most of the children were informed about the illness by the time of the study, their drawings and conversations suggest they did not perceive that communication and support were available within their families. Instead, signs of social isolation, poor self-esteem, and severe emotional distress were found. The parents' readiness to tell determined the interval between diagnosis and disclosure, which was typically 4 years. These findings have implications for nursing practice, research, and education.
"]},{"key":"dc:title","label":"Title","values":["Children with HIV: How they Feel About What Parents Say"]}]}],"canonical_facts":{"dc:creator":["Pease Instone, Susan, DNSc, MSN, CPNP"],"dc:date.available":["2021-06-28T07:00:00Z"],"dc:description.abstract":["With improvements in diagnosis and care, children with HIV infection are living long enough to reach school age, a stage when they are capable of perceiving the stigmatizing, life-threatening nature of their illness. Many parents desire to protect them from this knowledge by avoiding an open dialogue about their disease, even though pediatric professionals advocate disclosure. Research-based guidelines about the risks and benefits of telling, however, have not been available in the literature. Using an innovative, qualitative approach through the use of grounded theory and projective drawing techniques, this investigation sought to explore what parents said about the illness and how children responded socially and emotionally. Data were obtained from 13 parents and 12 school age children with HIV. Although most of the children were informed about the illness by the time of the study, their drawings and conversations suggest they did not perceive that communication and support were available within their families. Instead, signs of social isolation, poor self-esteem, and severe emotional distress were found. The parents' readiness to tell determined the interval between diagnosis and disclosure, which was typically 4 years. These findings have implications for nursing practice, research, and education.
"],"dc:identifier":["https://digital.sandiego.edu/dissertations/258"],"dc:subject":["children & youth","families & family life","Human Immunodeficiency Virus--HIV","nursing","parents & parenting","Psychotherapy"],"dc:title":["Children with HIV: How they Feel About What Parents Say"],"thesis:degree_discipline":["Nursing"],"thesis:degree_level":["Dissertation: Open Access"],"thesis:degree_name":["Doctor of Nursing Science"]},"updated_at":"2026-07-24T05:40:42Z"}