Marja Rany Rigotti Baltor

The perceptions of families with children having chronic diseases and their relationships with healthcare professionals

The prevalence of chronic disease in childhood has increased, placing families in constant contact with health professionals. In such situations the relationship with health professionals has an important role. Few scientific studies address this theme, in spite of its being highlighted as fundamental for effective interaction. The aim of this study was to characterize how the family of a child with a chronic disease perceives its relationship with health professionals. Twenty caregivers for children with chronic diseases were interviewed. The theoretical and methodological frameworks were, respectively, symbolic interactionism and thematic content analysis. The analytical process revealed four themes: role of the caregiver, stressful relationships, services and professionals, and seeking welcoming relationships. The outcomes of this interactional process, which show an incongruity of expectations and behaviors between professionals and families, are poor and generate feelings of abandonment. These can be eased through listening and understanding by other families in similar situations.The prevalence of chronic disease in childhood has increased, placing families in constant contact with health professionals. In such situations the relationship with health professionals has an important role. Few scientific studies address this theme, in spite of its being highlighted as fundamental for effective interaction. The aim of this study was to characterize how the family of a child with a chronic disease perceives its relationship with health professionals. Twenty caregivers for children with chronic diseases were interviewed. The theoretical and methodological frameworks were, respectively, symbolic interactionism and thematic content analysis. The analytical process revealed four themes: role of the caregiver, stressful relationships, services and professionals, and seeking welcoming relationships. The outcomes of this interactional process, which show an incongruity of expectations and behaviors between professionals and families, are poor and generate feelings of abandonment. These can be eased through listening and understanding by other families in similar situations.

Cuidado da criança com anomalia congênita: a experiência da família

O prognostico de sobrevida de criancas com anomalia congenita vem apresentando melhora; deste modo, e importante conhecer a vivencia da familia ao aceitar e inserir essa crianca na sociedade. Entretanto, os profissionais da saude, dentre eles o enfermeiro, ainda tem dificuldades relacionadas ao acompanhamento e orientacao da familia. O objetivo deste trabalho foi conhecer a experiencia da familia no cuidado a crianca portadora de anomalia congenita. O referencial teorico utilizado foi o Interacionismo Simbolico, e o metodo, a Narrativa. Das experiencias vivenciadas, o momento do diagnostico foi considerado um dos que causa maior sofrimento a familia. Apos esse periodo, o enfrentamento diario para a saude e bem-estar da crianca tornou-se objetivo fundamental. Concluiu-se que a assistencia a familia deve se basear em uma rede de apoio que a acolha principalmente no momento do diagnostico e durante as especificidades do cuidado a crianca.

Percepções da família da criança com doença crônica frente às relações com profissionais da saúde

The prevalence of chronic disease in childhood has increased, placing families in constant contact with health professionals. In such situations the relationship with health professionals has an important role. Few scientific studies address this theme, in spite of its being highlighted as fundamental for effective interaction. The aim of this study was to characterize how the family of a child with a chronic disease perceives its relationship with health professionals. Twenty caregivers for children with chronic diseases were interviewed. The theoretical and methodological frameworks were, respectively, symbolic interactionism and thematic content analysis. The analytical process revealed four themes: role of the caregiver, stressful relationships, services and professionals, and seeking welcoming relationships. The outcomes of this interactional process, which show an incongruity of expectations and behaviors between professionals and families, are poor and generate feelings of abandonment. These can be eased through listening and understanding by other families in similar situations.The prevalence of chronic disease in childhood has increased, placing families in constant contact with health professionals. In such situations the relationship with health professionals has an important role. Few scientific studies address this theme, in spite of its being highlighted as fundamental for effective interaction. The aim of this study was to characterize how the family of a child with a chronic disease perceives its relationship with health professionals. Twenty caregivers for children with chronic diseases were interviewed. The theoretical and methodological frameworks were, respectively, symbolic interactionism and thematic content analysis. The analytical process revealed four themes: role of the caregiver, stressful relationships, services and professionals, and seeking welcoming relationships. The outcomes of this interactional process, which show an incongruity of expectations and behaviors between professionals and families, are poor and generate feelings of abandonment. These can be eased through listening and understanding by other families in similar situations.

Percepciones de la familia del niño con enfermedad crónica frente a las relaciones con los profesionales de la salud

The prevalence of chronic disease in childhood has increased, placing families in constant contact with health professionals. In such situations the relationship with health professionals has an important role. Few scientific studies address this theme, in spite of its being highlighted as fundamental for effective interaction. The aim of this study was to characterize how the family of a child with a chronic disease perceives its relationship with health professionals. Twenty caregivers for children with chronic diseases were interviewed. The theoretical and methodological frameworks were, respectively, symbolic interactionism and thematic content analysis. The analytical process revealed four themes: role of the caregiver, stressful relationships, services and professionals, and seeking welcoming relationships. The outcomes of this interactional process, which show an incongruity of expectations and behaviors between professionals and families, are poor and generate feelings of abandonment. These can be eased through listening and understanding by other families in similar situations.The prevalence of chronic disease in childhood has increased, placing families in constant contact with health professionals. In such situations the relationship with health professionals has an important role. Few scientific studies address this theme, in spite of its being highlighted as fundamental for effective interaction. The aim of this study was to characterize how the family of a child with a chronic disease perceives its relationship with health professionals. Twenty caregivers for children with chronic diseases were interviewed. The theoretical and methodological frameworks were, respectively, symbolic interactionism and thematic content analysis. The analytical process revealed four themes: role of the caregiver, stressful relationships, services and professionals, and seeking welcoming relationships. The outcomes of this interactional process, which show an incongruity of expectations and behaviors between professionals and families, are poor and generate feelings of abandonment. These can be eased through listening and understanding by other families in similar situations.

Caring for a child with congenital anomalies: the experience of the family

O prognostico de sobrevida de criancas com anomalia congenita vem apresentando melhora; deste modo, e importante conhecer a vivencia da familia ao aceitar e inserir essa crianca na sociedade. Entretanto, os profissionais da saude, dentre eles o enfermeiro, ainda tem dificuldades relacionadas ao acompanhamento e orientacao da familia. O objetivo deste trabalho foi conhecer a experiencia da familia no cuidado a crianca portadora de anomalia congenita. O referencial teorico utilizado foi o Interacionismo Simbolico, e o metodo, a Narrativa. Das experiencias vivenciadas, o momento do diagnostico foi considerado um dos que causa maior sofrimento a familia. Apos esse periodo, o enfrentamento diario para a saude e bem-estar da crianca tornou-se objetivo fundamental. Concluiu-se que a assistencia a familia deve se basear em uma rede de apoio que a acolha principalmente no momento do diagnostico e durante as especificidades do cuidado a crianca.

Cuidados con un niño con anomalía congénita: la experiencia de la familia

O prognostico de sobrevida de criancas com anomalia congenita vem apresentando melhora; deste modo, e importante conhecer a vivencia da familia ao aceitar e inserir essa crianca na sociedade. Entretanto, os profissionais da saude, dentre eles o enfermeiro, ainda tem dificuldades relacionadas ao acompanhamento e orientacao da familia. O objetivo deste trabalho foi conhecer a experiencia da familia no cuidado a crianca portadora de anomalia congenita. O referencial teorico utilizado foi o Interacionismo Simbolico, e o metodo, a Narrativa. Das experiencias vivenciadas, o momento do diagnostico foi considerado um dos que causa maior sofrimento a familia. Apos esse periodo, o enfrentamento diario para a saude e bem-estar da crianca tornou-se objetivo fundamental. Concluiu-se que a assistencia a familia deve se basear em uma rede de apoio que a acolha principalmente no momento do diagnostico e durante as especificidades do cuidado a crianca.