Social Representations of Pediatric Patients’ Relatives without Current Therapeutic Treatment / Representações Sociais de Familiares de Pacientes Pediátricos Fora de Possibilidades Terapêuticas Atuais

Abstract

Objetivo: Descrever a compreensão de cuidadores de clientes pediátricos FPTA sobre o câncer e sua repercussão para o cuidado em domicílio. Método: pesquisa foi descritiva, com o emprego de uma abordagem qualitativa empregando a teoria das representações sociais. Resultados: Os dados desta pesquisa foram obtidos por meio da utilização de uma técnica de coleta: a livre associação de ideias, emergindo as unidades: cuidado paliativos: cuidador diante do cuidar. a essência do cuidar nas situações limites, A criança oncológica - a necessidade de um cuidar atencioso e o cuidar em casa – um cuidar familiar. Conclusão: Observou-se que os familiares de uma criança necessitam de um acompanhamento da equipe de saúde. a nível domiciliar, mais precisamente do enfermeiro para oferecer as informações necessárias sobre os principais cuidados de saúde nessa fase da vida, para oferecer o suporte emocional e minimizar as dúvidas sobre o tratamento instituído.

The spiritual dimension of parenting a child with a life-limiting or life-threatening condition: A mixed-methods systematic review

“…The vast majority of articles are based on qualitative research ( n = 47). 38 , 39 , 41 , 42 , 44 , 46 – 52 , 54 – 59 , 61 – 63 , 65 , 66 , 68 – 70 , 72 , 74 – 78 , 80 , 82 – 84 , 86 , 88 , 90 – 97 , 99 Eleven articles report a quantitative observational study. 40 , 43 , 45 , 53 , 67 , 71 , 73 , 85 , 87 , 89 , <...…”

“…38 , 41 , 46 – 49 , 58 – 60 , 69 , 73 , 74 , 76 , 82 , 86 , 87 , 94 , 96 , 99 Thirteen were from Europe. 50 , 52 , 53 , 55 , 61 , 66 , 68 , 75 , 85 , 92 , 93 , 95 , 100 Six studies were from South America, 54 , 57 , 62 , 80 , 84 , 90 , three from Australia. 51 , 56 , 65 In total, the studies report on the perspectives of 2355 parents.…”

“…Most parents preferred to fully embrace their parental role by caring for the child themselves, 95 and when they experienced difficulties in doing so 52 , 68 it caused feelings of distress and despair. 52 , 54 , 69 , 72 , 86 , 88 , 90 , 93 , 96 , 98 , 99 With regard to treatment, parents reported inner conflicts between doing “too little” and doing “too much”, 49 , 67 , 75 , 95 and frustration in case their expertise was questioned during hospital admission of the child 72 or their child was not addressed respectfully. 100 Lacking control made parents feel unprepared, scared, 46 and vulnerable.…”

“…Many parents expressed the need to be encouraged to connect with others. 42 – 44 , 46 , 52 , 68 , 72 , 80 , 90 Supportive relationships provided security and protective factors for parents’ bereavement. 57 , 68 Connecting to other parents who went through similar struggles could be helpful for parents.…”

Social representations of the family caregiver about palliative care in terminal patient / Representações sociais do cuidador familiar sobre cuidados paliativos em paciente terminal

“…Social representations are sustained by the social influences of communication, and thus constitute the realities of caregivers' daily lives, which is why they serve as the main means of establishing associations with which individuals connect to one another. 12,15 Palliative care uses a multi-professional approach to meet the needs of both patients and their families. It encompasses various mechanisms to ensure the patient's well-being, ranging from the relief of pain and distressing symptoms to a support system to help the patient and their family cope with death and bereavement.…”