ape Acta Paulista de Enfermagem Acta Paul Enferm 0103-2100 1982-0194 Escola Paulista de Enfermagem, Universidade Federal de São Paulo Resumen Objetivo: Estudiar el efecto mediador del estigma entre el relación familiar y en la soledad de pacientes con cáncer de mama. Métodos: Fueron seleccionadas 339 pacientes con cáncer de mama utilizando un método de muestro por conveniencia en ocho hospitales de la provincia de Anhui. Para la investigación se utilizó el cuestionario Family Caring Indexy las escalas Social Impact Scale y UCLA Loneliness Scale de diciembre de 2021 a julio de 2022. Resultados: El análisis univariado mostró diferencias significativas en el puntaje de la relación familiar de acuerdo con la edad (años), el índice de masa corporal (IMC), la educación, la situación laboral, el estado civil, el tiempo desde la cirugía (años) y la adhesión al ejercicio funcional del miembro afectado después de la cirugía (todos P<0,05). El análisis de la correlación de Pearson demostró que la relación familiar tuvo una correlación significativa negativa con el estigma y la soledad (P<0,01), y la soledad y el estigma tuvieron una correlación significativa positiva (P<0,01). Hubo un efecto mediador parcial del estigma entre el funcionamiento familiar y la soledad, y su efecto mediador fue responsable del 34,63 % del efecto total. Conclusion: La relación familiar afecta indirectamente a la soledad de pacientes con cáncer de mama por medio del estigma. Esto sugiere que los profesionales de la salud deben prestar atención a la relación familiar debido a su importancia para la recuperación de las pacientes, aumentar los recursos intrafamiliares para aumentar el nivel de resiliencia familiar y buscar reducir el estigma relacionado con la enfermedad de los pacientes, y así reducir la experiencia de soledad. Introdução De acordo com as estatísticas globais mais recentes sobre o câncer, o câncer de mama feminino se tornou o câncer mais comum em todo o mundo, com cerca de 2.261.000 novos casos (11,6%) e sendo responsável por mais de 685.000 mortes (6,9%).(1) A China registou aproximadamente 416.000 casos de câncer da mama em mulheres em 2020, representando 18,6% da população mundial com câncer da mama.(2) Estudos têm mostrado que indivíduos frequentemente experimentam emoções negativas, como solidão e estigma, após serem diagnosticados com câncer. Solidão é definida como uma experiência subjetiva e negativa resultante de discrepâncias entre relacionamentos sociais ou expectativas esperadas e reais percebidas.(3, 4) O estigma é uma experiência interna de vergonha relacionada à doença e um atributo que transmite estereótipos negativos e estresse psicológico. Assim, os pacientes muitas vezes sentem vergonha devido à imagem corporal alterada causada pela cirurgia e radioterapia, levando-os a se retraírem tanto psicológica quanto socialmente.(5) Essa tendência é mais pronunciada na cultura chinesa, onde as pessoas são frequentemente sutis e introvertidas. Portanto, pacientes femininas com câncer de mama frequentemente se sentem hesitantes em expressar abertamente suas verdadeiras emoções sobre seu diagnóstico de câncer, exacerbando seu senso de isolamento.(6) O relacionamento familiar pode fornecer mais assistência, incentivo e apoio entre os membros da família, criando um ambiente propício ao desenvolvimento físico, mental e social saudável.(7) Estudos têm demonstrado que melhorar o relacionamento familiar dos pacientes é uma estratégia prioritária para melhorar a saúde mental, o que pode influenciar o estado de saúde individual e o início e a regressão da doença, reduzir a experiência de estigma e isolamento e promover a recuperação total.(8, 9) No entanto, pouco se sabe sobre a relação entre o relacionamento familiar, o estigma e a solidão em pacientes com câncer de mama, e os caminhos de ação entre os fatores permanecem obscuros. Portanto, este estudo teve como objetivo investigar os níveis de relacionamento familiar, estigma e solidão em pacientes com câncer de mama e explorar ainda mais o efeito mediador do estigma na relação entre relacionamento familiar e solidão em pacientes com câncer de mama. Métodos Um total de 339 pacientes com câncer de mama atendidas em oito hospitais na província de Anhui foram selecionadas como população do estudo usando um método de amostragem de conveniência de dezembro de 2021 a julho de 2022. Os critérios de inclusão foram os seguintes: (1) pacientes com câncer de mama que foram submetidas a mastectomia unilateral ou bilateral de acordo com as Diretrizes e Normas para o Diagnóstico e Tratamento do Câncer de Mama da Associação Chinesa Anticâncer (edição de 2021)(10); (2) idade ≥ 18 anos; (3) capacidade de falar e ler mandarim; (4) pacientes que deram consentimento informado e participaram voluntariamente deste estudo. Os critérios de exclusão foram os seguintes: (1) pacientes com outros tumores malignos; (2) pacientes com anormalidades cardiopulmonares graves. A página de rosto do questionário explicou o propósito e o procedimento da pesquisa. As participantes assinaram um termo de consentimento informado antes de preencher o questionário. As participantes preencheram pessoalmente os questionários em um local tranquilo, e os pesquisadores forneceram todas as explicações necessárias. Os questionários foram verificados no local do estudo a fim de observar sua integridade pelos pesquisadores. Um total de 339 pacientes elegíveis com câncer de mama foram convidadas a participar, e 12 questionários foram excluídos (questionário com opções de resposta inconsistentes e mais de 2/3 respostas ausentes). No geral, 327 (96,46%) questionários válidos foram analisados. As características demográficas e relacionadas à doença das participantes incluídas no estudo foram idade, Índice de Massa Corporal (IMC), nível de escolaridade, residência familiar, renda familiar mensal per capita, situação de trabalho, estado civil, tempo desde a cirurgia, forma de pagamento das despesas médicas, se uma prótese foi usada anteriormente, local da mastectomia, adesão ao exercício funcional após a cirurgia e presença de linfedema no membro superior do lado afetado. Em 2000, uma escala foi desenvolvida por Fife e Wright para avaliar o estigma entre pacientes com câncer e pacientes com AIDS, com um coeficiente alfa de Cronbach de 0,850~0,900 para cada dimensão. Em 2007, Pan et al. (acadêmicos em Taiwan e China), traduziram para o chinês para avaliar pacientes com depressão, esquizofrenia e AIDS, mostrando um coeficiente alfa de Cronbach de 0,990. Jin et al. pesquisaram 103 pacientes com câncer de mama usando esta escala, com um coeficiente alfa de Cronbach de 0,954.(11) Este questionário contém os seguintes quatro domínios: discriminação econômica (3 itens), exclusão social (9 itens), vergonha interna (5 itens) e isolamento social (7 itens), com um total de 24 itens. Foi usada uma escala Likert de 4 pontos, com pontuações de 1 a 4 indicando “concordo totalmente”, “concordo”, “discordo” e “discordo totalmente”, respectivamente. Quanto maior a pontuação, maior a influência social percebida e mais forte o sentimento de vergonha. O APGAR foi desenvolvido por Gabriel em 1978 e introduzido na China por Lv et al. em 1999. Foi usado para avaliar o relacionamento familiar em todas as faixas etárias acima da adolescência, com um coeficiente alfa de Cronbach de 0,830. O questionário incluiu cinco itens, tais como: ajuste familiar, cooperação, duração, emocionalidade e proximidade. Cada item foi pontuado em uma escala de 3 pontos, na qual “frequentemente” foi pontuado como 2, “às vezes”, como 1, e “quase nunca”, como 0. As pontuações gerais da escala variaram de 0 a 10, e quanto maior a pontuação, melhor a função familiar. Russell et al. desenvolveram a UCLA Loneliness Scale em 1988. Neste estudo, a versão chinesa desta escala por Wang et al. foi usada para avaliar a solidão causada pela discrepância entre o desejo dos indivíduos por interação social e sua situação real. A escala consiste em 20 itens em uma escala Likert de 4 pontos, com pontuações de 1 a 4 indicando “nunca”, “raramente”, “às vezes” e “sempre”, respectivamente. O intervalo de pontuação total é de 20 a 80, com pontuações mais altas indicando níveis mais altos de solidão. O SPSS para Windows 10, versão 25.0 (IBM Corp., Armonk, NY, EUA), foi usado para análise de dados. As variáveis contínuas foram resumidas como média ± desvio padrão e as variáveis categóricas número e porcentagens. O teste de correlação de Pearson foi usado para análise de correlação. O teste t de amostras independentes e a análise ANOVA foram usados para dados contínuos que seguiram uma distribuição normal, e o teste qui-quadrado para dados categóricos. O método bootstrap do SPSS foi usado para verificar o efeito mediador do estigma entre o relacionamento familiar e a solidão em pacientes com câncer de mama, e uma diferença significativa foi considerada em P < 0,05. O protocolo do estudo foi aprovado pelos Comitês de ética do Hospital Popular da Cidade de Fuyang [2022-22 e 2022-71]. Antes da inscrição no estudo, os participantes elegíveis assinaram um formulário de consentimento. Após a conclusão da pesquisa, todos os dados foram armazenados anonimamente (sem nomes ou informações de identificação) para proteger a confidencialidade dos participantes. Os participantes tinham o direito de decidir se participavam do estudo e podiam se retirar do estudo a qualquer momento. Resultados Um total de 327 pacientes com câncer de mama foram incluídas neste estudo, com idade média de 48,67 ± 9,64 anos. Houve diferenças significativas nas pontuações de relação familiar por idade, IMC, nível de escolaridade, status de trabalho, estado civil, tempo desde a cirurgia e adesão ao exercício funcional do membro afetado após a cirurgia (todos P < 0,05). Pacientes que eram jovens e de meia-idade, atualmente empregadas, tinham alto nível de escolaridade e aqueles dentro de 1-3 anos após a cirurgia tinham mau relacionamento familiar. Pacientes com IMC alto, aquelas que eram casadas e aquelas com exercícios regulares tinham melhor relacionamento familiar (Tabela 1). Tabela 1 Análise univariada do relacionamento familiar em pacientes com câncer de mama com diferentes características (n=327) Item Número de pessoas [n(%)] Relacionamento familiar (x ± s) F/t Valor de p Idade 4,211 0,016 22–44 10933,33 6,48 ± 3,95 45–59 18656,88 7,68 ± 3,14a >60 329,79 7,31 ± 3,32 IMC (kg/m2) 3,499 0,031 <18,50 92,75 5,44 ± 4,80 18,50–24,99 20763,30 7,00 ± 3,65 >25,00 11133,94 7,86 ± 2,92bc Educação 13,361 <0,001 Ensino fundamental e abaixo 16349,85 4,49 ± 3,07 Ensino fundamental II, ensino médio e faculdade 12939,45 7,68 ± 3,37 Faculdade e acima 3510,70 7,49 ± 4,43bc Local de residência −0,942 0,347 Urbano 11635,47 7,00 ± 3,80 Rural 21164,53 7,38 ± 3,29 Renda familiar mensal 0,943 0,390 <3000 24374,31 7,40 ± 3,38 3000–5000 5817,74 6,76 ± 3,71 >5000 267,95 6,88 ± 3,93 Situação de trabalho 4,280 0,015 Trabalhando 6319,27 6,17 ± 4,24 Desempregado 23872,78 7,43 ± 3,25a Aposentado 267,95 8,15 ± 3,00c Estado civil 6,932 0,001 Solteiro 92,75 3,22 ± 4,21 Casado 29590,21 7,41 ± 3,35a Divorciado ou viúvo 237,03 6,65 ± 4,00c Tempo desde a cirurgia 4,854 0,003 <1 22067,28 7,63 ± 3,33 1 ≤ ano < 3 7021,41 6,13 ± 3,67a 3 ≤ anos < 5 237,03 6,17 ± 3,86 ≥ 5 144,28 8,57 ± 2,82de Método de pagamento de despesas médicas 0,309 0,720 Pagamento próprio 51,53 7,00 ± 4,47 Seguro médico 32298,47 6,81 ± 3,67 Você já usou um implante mamário antes? −0,435 0,665 Sim 4112,54 7,02 ± 3,46 Não 28687,46 7,28 ± 3,49 Localização da mama ausente 2,011 0,135 Esquerda 18255,66 6,92 ± 3,57 Direita 13440,98 7,60 ± 3,35 Bilateral 11(3,36) 8,27 ± 3,29 Histórico familiar da doença −1,727 0,085 Sim 13(4,00) 5,62 ± 4,19 Não 314(96,00) 7,31 ± 3,44 Exercício funcional do membro afetado após a cirurgia 3,144 0,044 Frequentemente 206(63,00) 7,48 ± 3,59 Ocasionalmente 100(30,58) 7,12 ± 3,22 Raramente 21(6,42) 5,52 ± 3,23c Linfedema da extremidade superior afetada 2,339 0,075 Não 276(84,40) 7,39 ± 3,39 Leve 42(12,84) 6,83 ± 3,79 Moderado 6(1,83) 3,83 ± 3,25 Severa 3(0,92) 6,67 ± 5,77 Nota: a indica que a segunda camada é significativamente diferente em comparação com a primeira camada; b indica que a terceira camada é significativamente diferente em comparação com a segunda camada; c indica que a terceira camada é significativamente diferente em comparação com a primeira camada; d indica que a quarta camada é significativamente diferente em comparação com a segunda camada; e indica que a quarta camada é significativamente diferente em comparação com a terceira camada. A pontuação média do relacionamento familiar em pacientes com câncer de mama foi de 7,24 ± 3,48. A pontuação média total do estigma foi de 60,30 ± 12,25, com pontuação da dimensão de discriminação econômica de 8,42 ± 1,88, pontuação da dimensão de exclusão social de 21,36 ± 4,96, pontuação da dimensão de vergonha interna de 12,65 ± 2,94 e pontuação da dimensão de isolamento social de 17,87 ± 4,02. A pontuação média da solidão foi de 44,76 ± 8,22. A análise de correlação de Pearson mostrou uma correlação negativa significativa entre o relacionamento familiar e o estigma (discriminação econômica, exclusão social, vergonha interna, isolamento social) (r = −0,169, −0,206, −0,220, −0,237, P < 0,01); uma correlação negativa significativa entre o relacionamento familiar e a solidão (r = −0,298, P < 0,01); e uma correlação positiva significativa entre a solidão e o estigma (discriminação econômica, exclusão social, vergonha internalizada e isolamento social) (r = 0,290, 0,457, 0,438, 0,436, p < 0,01) (Tabela 2). Tabela 2 Análise de correlação entre relacionamento familiar, estigma e solidão em pacientes com câncer de mama Relacionamento familiar Discriminação econômica Exclusão social Vergonha interna Isolamento social Solidão Relacionamento familiar 1 — — — — — Discriminação econômica −0,169** 1 — — — — Exclusão social −0,206** 0,626** 1 — — — Vergonha interna −0,220** 0,524** 0,742** 1 — — Isolamento social −0,237** 0,587** 0,808** 0,726** 1 — Solidão −0,298** 0,290** 0,457** 0,438** 0,436** 1 Nota: “indica P < 0.01 O efeito mediador entre relação familiar, estigma e solidão em pacientes com câncer de mama é mostrado na Tabela 3, e o modelo de efeito mediador é mostrado na Figura 1. Os resultados mostraram um efeito mediador parcial do estigma entre função familiar e solidão, e que a razão do efeito mediador para o efeito total foi de 34,63% [a × b/c = (−0,240) × 0,430/(−0,298) × 100% = 34,63%]. Isso indica que o efeito previsto da função familiar em 34,63% do efeito previsto da solidão foi indiretamente influenciado pelo estigma. Tabela 3 Teste do modelo de efeito mediador do estigma Variável independente Solidão Estigma Solidão β t β t β t Relacionamento familiar −0,298 −5,632* −0,240 −4,456* −0,195 −3,969* Estigma — — — — 0,430 8,764* R2 0,089 0,055 0,264 F 31,717* 19,854* 57,965* Nota: * indica P < 0,01 Figura 1 Modelo de efeito mediador do estigma Discussão Neste estudo, a pontuação de relacionamento familiar de pacientes com câncer de mama foi de 7,24 ± 3,48, o que é ligeiramente inferior aos achados de He et al.(12) Pacientes que eram jovens ou de meia-idade, atualmente empregados, tinham alto nível educacional, e aqueles dentro de 1-3 anos após a cirurgia tinham relacionamento familiar ruim. A razão pode ser que mulheres jovens e de meia-idade estão frequentemente avançando em suas carreiras, e pacientes com maior escolaridade tendem a ter empregos mais bem pagos. É evidente que mulheres jovens e de meia-idade, assim como pacientes com maior escolaridade, frequentemente servem como os principais ganha-pão de suas famílias. Eles têm a responsabilidade de sustentar uma dinâmica familiar estável e fornecer as coisas necessárias para a sobrevivência e o desenvolvimento da família. Assim, quando esses indivíduos ficam doentes, sua situação econômica familiar tende a se deteriorar.(13) Pacientes dentro de 1 a 3 anos após a cirurgia têm medo da recorrência do câncer porque precisam passar continuamente por quimioterapia e radioterapia como parte de seu acompanhamento.(14) Além disso, as famílias das pacientes podem não entender completamente a importância de cuidar dos pacientes em casa no curto prazo, levando a um menor nível de relacionamento familiar. Pacientes com IMC alto, aquelas que são casadas e aquelas que praticam exercícios regularmente tiveram melhor relacionamento familiar. Isso pode estar relacionado ao fato de que eles têm mais oportunidades de comer e se comunicar com suas famílias e estão mais dispostos a realizar exercícios físicos.(15) Um bom relacionamento conjugal é a base para a manutenção do bom relacionamento familiar, pois os pacientes podem obter ajuda dos seus cônjuges quando encontram dificuldades e receber apoio quando pretendem prosseguir novas atividades ou empregos.(16) Neste estudo, descobrimos que a pontuação média de solidão dos 327 pacientes com câncer de mama (44,76 ± 8,22) foi negativamente correlacionada com o relacionamento familiar (r < 0,01), e que o relacionamento familiar dos pacientes pode contribuir diretamente para a solidão. Pacientes com câncer de mama (especialmente aquelas em tratamento ativo após mastectomia) frequentemente apresentam imagens físicas ruins, como seios assimétricos ausentes e linfedema relacionado ao câncer de mama (LRCM). Quando combinado com o medo da recorrência do câncer ao longo da sobrevivência, isso pode levar a uma mudança nos papéis e comportamentos familiares dos pacientes, resultando em desequilíbrio no sistema familiar e enfraquecimento do relacionamento familiar.(17, 18) A teoria do modelo de sistemas de relacionamento familiar sugere que o relacionamento familiar está intimamente relacionado aos relacionamentos interfamiliares e aos estilos de interação.(19) Em um ambiente familiar disfuncional, os indivíduos podem apresentar dúvidas sobre si mesmos e sobre o mundo ao seu redor devido a necessidades psicológicas não atendidas, desenvolver ansiedade e apresentar mudanças de comportamento, como evitação e retraimento, o que pode dificultar o desenvolvimento de bons relacionamentos interpessoais e a socialização individual e gerar uma sensação de isolamento.(20) Portanto, recomenda-se que os profissionais de enfermagem compreendam completamente a estrutura de relacionamento familiar do paciente (situação de trabalho, estado civil, etc.), avaliem prontamente o estado de relacionamento familiar do paciente e forneçam cuidados direcionados às suas deficiências e fraquezas, a fim de melhorar o nível de relacionamento familiar e reduzir a solidão individual em pacientes com câncer de mama. Neste estudo, descobrimos que 327 pacientes com câncer de mama tiveram uma pontuação geral de estigma moderada a alta de 60,30 ± 12,25. Como uma doença crônica, o câncer de mama tem um período de tratamento relativamente longo, e o alto custo do tratamento tende a comprometer o padrão de vida da família dos pacientes. Assim, os pacientes são propensos a ter sentimentos de culpa e autocensura, o que desencadeia um sentimento de vergonha. Além disso, as diferenças na consciência comportamental e no nível econômico resultantes das diferenças no nível educacional levam à falta de recursos para comunicação com o mundo exterior, o que, por sua vez, leva à solidão entre os pacientes. Este estudo mostrou que o estigma mediou parcialmente o efeito entre o relacionamento familiar e a solidão em pacientes com câncer de mama, com o efeito mediador respondendo por 34,63% do efeito total. Pacientes com famílias que se relacionam bem podem receber mais incentivo e apoio de suas famílias, e o conforto emocional e a orientação emocional entre os membros da família diminuirão o estigma associado ao tratamento da doença do paciente, levando-o a desenvolver autoconfiança e estratégias positivas de enfrentamento, buscar ativamente recursos de pertencimento e, assim, reduzir o sentimento de solidão.(21) Estudos mostram que o estigma, um fenômeno psicológico negativo, tem um impacto adverso no corpo e na mente dos pa-cientes.(5) Reduzir a experiência do estigma não só fortalece a compreensão dos pacientes sobre a doença, mas também os ajuda a se adaptarem à mudança de papéis familiares, estabelecer uma nova divisão familiar de trabalho e padrão de compartilhamento de responsabilidades,(7) e melhorar as funções familiares. Também pode melhorar o nível de participação social, aumentar a adaptabilidade social e reduzir a solidão.(4) Portanto, recomenda-se que o Estado ajuste adequadamente as políticas relevantes para fornecer aos pacientes mais apoio financeiro e subsídios, ao mesmo tempo em que apela à comunidade para que preste atenção aos pacientes com câncer de mama como um grupo vulnerável e forme uma rede de apoio entre o hospital, a família e a sociedade.(22) Os pacientes são encorajados a serem ousados ao se expressar quando precisam de mais apoio. Isso permitirá que eles tenham uma sensação de segurança e pertencimento, identifiquem melhores estratégias de autorregulação emocional e, assim, reduzam a sensação de vergonha e isolamento.(23) Este estudo não apenas demonstrou o papel mediador do estigma entre a função familiar e a solidão de pacientes com câncer de mama e esclareceu a relação entre os três, mas também forneceu uma base para o desenvolvimento de programas práticos de orientação científica em saúde e intervenções para melhorar a saúde mental e a qualidade de vida de pacientes com câncer de mama. No entanto, este estudo teve algumas limitações. Primeiro, o grau de relacionamento familiar não foi agrupado hierarquicamente, e é importante determinar a hierarquia de relacionamento familiar no futuro para facilitar um estudo aprofundado. Segundo, devido às limitações da população do estudo, a generalização do modelo de efeito mediador também é limitada, e é necessário expandir a população do estudo e conduzir estudos multicêntricos e longitudinais no futuro para explorar as mudanças de trajetória da solidão no grupo de câncer de mama. Terceiro, o estigma não foi totalmente mediado entre o relacionamento familiar e a solidão em pacientes com câncer de mama, e o valor de R2 não foi alto. Portanto, análises adicionais precisam ser conduzidas no futuro, levando em consideração a depressão, a carga auto-percebida, o isolamento social e outros fatores.(24, 25) Conclusão Pacientes com câncer de mama têm níveis mais altos de estigma e solidão, e o relacionamento familiar prevê negativamente o estigma e a solidão. Nossas descobertas também confirmaram que o estigma desempenha um papel parcialmente mediador entre o relacionamento familiar e a solidão em pacientes com câncer de mama. É recomendado que os profissionais de enfermagem prestem atenção ao relacionamento familiar devido à sua importância para a recuperação dos pacientes, aumentem os recursos intrafamiliares para aumentar o nível de resiliência familiar e reduzam o estigma relacionado à doença dos pacientes, aliviando assim a experiência de solidão. Agradecimentos Este projeto foi apoiado pelo Programa de Pesquisa e Desenvolvimento da Província de Anhui em 2018 (Projeto 1804H08020269) e pelo projeto de pesquisa científica da Comissão de Saúde da Cidade de Fuyang em 2019 (Projeto FY2019-044). Referências 1 1 Sung H, Ferlay J, Siegel RL, Laversanne M, Soerjomataram I, Jemal A, et al. Global Cancer Statistics 2020: GLOBOCAN Estimates of Incidence and Mortality Worldwide for 36 Cancers in 185 Countries. CA Cancer J Clin. 2021;71(3):209–49. 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Support Care Cancer 2023 31 6 363 363 10.37689/acta-ape/2025A000032i Original Article Effect of stigma on family relationship and loneliness in breast cancer patients 0009-0003-1219-0657 Wang Ying 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0000-0002-1529-4369 Zhu Zhenhua 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0000-0002-9195-4453 Liu Annuo 2 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0000-0002-1067-7950 Zhang Ruixin 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0000-0003-0107-0943 Jiao Dahai 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0000-0002-5366-3727 Ma Xiujuan 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0009-0008-3026-2825 Jin Yuru 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 0009-0009-1029-4624 Zhai Jingfei 1 contributed to the conception of the study, analysis and interpretation of the data, writing of the article, relevant critical review of the intellectual content and approval of the final version to be published 1 Fuyang People’s Hospital, Fuyang, China 2 Anhui Medical University, Hefei, Anhui, China Corresponding author: Ying Wang, E-mail: 36163913@qq.com Associate Editor Edvane Birelo Lopes De Domenico (https://orcid.org/0000-0001-7455-1727), Escola Paulista de Enfermagem, Universidade Federal de São Paulo, São Paulo, SP, Brasil Conflicts to interest: none to declare. eAPE00032i Abstract Objective: To explore the mediating effect of stigma between family relationship and loneliness in breast cancer patients. Methods: A total of 339 breast cancer patients were selected using a convenience sampling method from eight hospitals in Anhui Province and surveyed using the Family Caring Index questionnaire, Social Impact Scale, and UCLA Loneliness Scale from December 2021 to July 2022. Results: Univariate analysis showed significant differences in family relationship scores according to age (years), body mass index (BMI), education, work status, marital status, time since surgery (years), and adherence to functional exercise of the affected limb after surgery (all P < 0.05). Pearson correlation analysis showed that family relationship was significantly negatively correlated with stigma and loneliness (P < 0.01), and loneliness and stigma were significantly positively correlated (P < 0.01). There was a partial mediating effect of stigma between family relationship and loneliness, and its mediating effect accounted for 34.63% of the total effect. Conclusion: Family relationship indirectly affects loneliness in breast cancer patients through stigma. This suggests that care workers should pay attention to family relationship due to its importance for patients’ recovery, increase intra-family resources to enhance the level of family resilience, and seek to reduce stigma related to patients’ illness, thereby reducing the experience of loneliness. Keywords Breast neoplasms Loneless Family frelations Social stigma Key Research and Development Program of Anhui Province in 2018 1804H08020269 2019 Fuyang City Health Commission scientific research Project FY2019-044 This project was supported by the Key Research and Development Program of Anhui Province in 2018 (Project no. 1804H08020269); 2019 Fuyang City Health Commission scientific research Project (project no. FY2019-044). Introduction According to the most recent global cancer statistics, female breast cancer has become the most common cancer worldwide, with about 2,261,000 new cases (11.6%) and accounting for over 685,000 deaths (6.9%).(1) China recorded approximately 416,000 female breast cancer cases in 2020, accounting for 18.6% of the global breast cancer population.(2) Studies have shown that individuals often experience negative emotions, such as loneliness and stigma, after being diagnosed with cancer. Loneliness is defined as a subjective, negative experience resulting from discrepancies between expected and actual perceived social relationships or expectations.(3, 4) Stigma is an internal experience of shame related to illness and an attribute that conveys negative stereotypes and psychological stress. Thus, patients often feel shame due to altered body image caused by surgery and radiotherapy, leading them to withdraw both psychologically and socially.(5) This tendency is more pronounced in the Chinese culture, where people are often subtle and introverted. Therefore, female breast cancer patients often feel hesitant to openly express their true emotions about their cancer diagnosis, exacerbating their sense of isolation.(6) Family relationship can provide more assistance, encouragement, and support among family members, creating an environment conducive to healthy physical, mental, and social development.(7) Studies have shown that improving patients’ family relationship is a priority strategy for improving mental health, which can influence individual health status and disease onset and regression, reduce the experience of stigma and isolation, and promote full recovery.(8, 9) However, little is known about the relationship between family relationship, stigma, and loneliness in breast cancer patients, and the pathways of action between the factors remain unclear. Therefore, this study aimed to investigate the levels of family relationship, stigma, and loneliness in breast cancer patients and to further explore the mediating effect of stigma in the relationship between family relationship and loneliness in breast cancer patients. Methods A total of 339 breast cancer patients attending eight hospitals in Anhui Province were selected as the study population using a convenience sampling method from December 2021 to July 2022.The inclusion criteria were as follows: (1) breast cancer patients who had undergone unilateral or bilateral mastectomy in accordance with the Guidelines and Norms for the Diagnosis and Treatment of Breast Cancer of the Chinese Anti-Cancer Association (2021 edition)(10); (2) age ≥ 18 years; (3) the ability to speak and read Mandarin; (4) patients who gave informed consent and voluntarily participated in this study. The exclusion criteria were as follows: (1) those with other malignant tumors; (2) those with severe cardiopulmonary abnormalities. The cover page of the questionnaire explained the research purpose and procedure. Participants signed an informed consent form before filling out the questionnaire. The participants personally completed the questionnaires in a quiet place, and the investigators provided any necessary explanations. The questionnaires were checked at the study site for completeness by the investigators. A total of 339 eligible breast cancer patients were invited to participate, and 12 questionnaires were excluded (questionnaire with inconsistent answer options and more than 2/3 missing answers). Overall, 327 (96.46%) valid questionnaires were analyzed. Participants’ demographic and disease-related characteristics included in the study were age, body mass index (BMI), education level, family residence, per capita monthly household income, work status, marital status, time since surgery, mode of payment for medical expenses, whether a prosthesis had previously been worn, the location of the mastectomy, adherence to functional exercise after the surgery, and presence of lymphoedema in the upper limb of the affected side. In 2000, a scale was developed by Fife and Wright to evaluate stigma among cancer patients and AIDS patients, with a Cronbach’s alpha coefficient of 0.850∼0.900 for each dimension. In 2007, Pan et al. (scholars in Taiwan and China), translated it into Chinese to assess patients with depression, schizophrenia, and AIDS, showing a scale Cronbach’s alpha coefficient of 0.990. Jin et al. surveyed 103 breast cancer patients using this scale, with a Cronbach’s alpha coefficient of 0.954. This questionnaire contains the following four domains: economic discrimination (3 items), social exclusion (9 items), internal shame (5 items), and social isolation (7 items), with a total of 24 items. A 4-point Likert scale was used, with scores from 1 to 4 indicating “strongly agree,” “agree,” “disagree,” and “strongly disagree,” respectively. The higher the score, the greater the perceived social influence and the stronger the sense of shame. The APGAR was developed by Gabriel in 1978 and introduced to China by Lv et al. in 1999. It was used for assessing family relationship in all age groups above adolescence, with a Cronbach’s alpha coefficient of 0.830. The questionnaire included five items, including family adjustment, cooperation, length, emotionality, and closeness. Each item was scored on a 3-point scale, in which “often” was scored as 2, “sometimes” as 1, and “almost never” as 0. The overall scale scores ranged from 0 to 10, and the higher the score, the better the family function. Russell et al. developed the UCLA Loneliness Scale in 1988. In this study, the Chinese version of this scale by Wang et al. was used to assess loneliness caused by the discrepancy between individuals’ desire for social interaction and their real situation. The scale consists of 20 items on a 4-point Likert scale, with scores from 1 to 4 indicating “never,” “rarely,” “sometimes,” and “always,” respectively. The total score range is 20-80, with higher scores indicating higher levels of loneliness. SPSS for Windows 10, version 25.0 (IBM Corp., Armonk, NY, USA) was used for data analysis. Continuous variables were summarized as mean ± standard deviation and categorical variables number and percentages. Pearson correlation test was used for correlation analysis. Independent samples t-test and ANOVA analysis were used for continuous data that followed a normal distribution, and chi-squared test for categorical data. The Bootstrap method of SPSS was used to verify the mediating effect of stigma between family relationship and loneliness in breast cancer patients, and a significant difference was considered at P < 0.05. The study protocol was approved by the ethics committees of Fuyang City People’s Hospital [2022-22 & 2022-71]. Before enrolment in the study, eligible participants signed a consent form. After the survey was completed, all data were stored anonymously (without names or identifying information) to protect participants’ confidentiality. Participants had the right to decide whether to participate in the study and could withdraw from the study at any time. Results A total of 327 breast cancer patients were included in this study, with a mean age of 48.67± 9.64 years. There were significant differences in family function scores by age, BMI, education level, work status, marital status, time since surgery, and adherence to functional exercise of the affected limb after surgery (all P < 0.05). Patients who were young and in middle age, currently employed, had a high education level, and those within 1–3 years after surgery had poor family relationship. Patients with high BMI, those who were married, and those with regular exercise had better family relationship (Table 1). Table 1 Univariate analysis of family relationship in breast cancer patients with different characteristics (n=327) Item Number of people [n(%)] Family relationship (x ± s) F/t p-value Age 4.211 0.016 22–44 10933.33 6.48 ± 3.95 45–59 18656.88 7.68 ± 3.14a >60 329.79 7.31 ± 3.32 BMI(kg/m2) 3.499 0.031 <18.50 92.75 5.44 ± 4.80 18.50–24.99 20763.30 7.00 ± 3.65 >25.00 11133.94 7.86 ± 2.92bc Education level 13.361 <0.001 Elementary school and below 16349.85 4.49 ± 3.07 Junior high school, high school, and junior college 12939.45 7.68 ± 3.37 College and above 3510.70 7.49 ± 4.43bc Place of residence -0.942 0.347 Urban 11635.47 7.00 ± 3.80 Rural 21164.53 7.38 ± 3.29 Monthly household income 0.943 0.390 <3000 24374.31 7.40 ± 3.38 3000–5000 5817.74 6.76 ± 3.71 >5000 267.95 6.88 ± 3.93 Work Status 4.280 0.015 Working 6319.27 6.17 ± 4.24 Unemployed 23872.78 7.43 ± 3.25a Retired 267.95 8.15 ± 3.00c Marital status 6.932 0.001 Unmarried 92.75 3.22 ± 4.21 Married 29590.21 7.41 ± 3.35a Divorced or widowed 237.03 6.65 ± 4.00c Time since surgery 4.854 0.003 <1 22067.28 7.63 ± 3.33 1 ≤ year < 3 7021.41 6.13 ± 3.67a 3 ≤ year < 5 237.03 6.17 ± 3.86 ≥ 5 144.28 8.57 ± 2.82de Medical expenses payment method 0.309 0.720 Self-pay 51.53 7.00 ± 4.47 Medical Insurance 32298.47 6.81 ± 3.67 Have you ever worn a breast implant before? −0.435 0.665 Yes 4112.54 7.02 ± 3.46 No 28687.46 7.28 ± 3.49 Location of missing breast 2.011 0.135 Left 18255.66 6.92 ± 3.57 Right 13440.98 7.60 ± 3.35 Bilateral 11(3.36) 8.27 ± 3.29 Family history of the disease −1.727 0.085 Yes 13(4.00) 5.62 ± 4.19 No 314(96.00) 7.31 ± 3.44 Functional exercise of the affected limb after surgery 3.144 0.044 Frequently 206(63.00) 7.48 ± 3.59 Occasionally 100(30.58) 7.12 ± 3.22 Rarely 21(6.42) 5.52 ± 3.23c Lymphedema of the affected upper extremity 2.339 0.075 No 276(84.40) 7.39 ± 3.39 Mild 42(12.84) 6.83 ± 3.79 Moderate 6(1.83) 3.83 ± 3.25 Severe 3(0.92) 6.67 ± 5.77 Note: a indicates that the second layer is significantly different compared to the first layer; b indicates that the third layer is significantly different compared to the second layer; c indicates that the third layer is significantly different compared to the first layer; d indicates that the fourth layer is significantly different compared to the second layer; e indicates that the fourth layer is significantly different compared to the third layer The mean family relationship score in breast cancer patients was 7.24 ± 3.48. The mean total stigma score was 60.30 ± 12.25, with economic discrimination dimension score of 8.42 ± 1.88, social exclusion dimension score of 21.36 ± 4.96, internal shame dimension score of 12.65 ± 2.94, and social isolation dimension score of 17.87 ± 4.02. The mean loneliness score was 44.76 ± 8.22. Pearson correlation analysis showed a significant negative correlation between family relationship and stigma (economic discrimination, social exclusion, internal shame, social isolation) (r = −0.169, −0.206, −0.220, −0.237, P < 0.01); a significant negative correlation between family relationship and loneliness (r = −0.298, P < 0.01); and a significant positive correlation between loneliness and stigma (economic discrimination, social exclusion, internalized shame, and social isolation) (r = 0.290, 0.457, 0.438, 0.436,p < 0.01) (Table 2). Table 2 Correlation analysis of family relationship, stigma, and loneliness in breast cancer patients Family relationship Economic discrimination Social exclusion Internal shame Social isolation Loneliness Family relationship 1 — — — — — Economic discrimination -0.169** 1 — — — — Social exclusion -0.206** 0.626** 1 — — — Internal shame -0.220** 0.524** 0.742** 1 — — Social isolation -0.237** 0.587** 0.808** 0.726** 1 — Loneliness -0.298** 0.290** 0.457** 0.438** 0.436** 1 Note: ** indicates P < 0.01 The mediating effect between family function, stigma, and loneliness in breast cancer patients is shown in table 3, and the model of mediating effect is shown in figure 1. The results showed a partial mediating effect of stigma between family function and loneliness, and that the ratio of the mediating effect to the total effect was 34.63% [a × b/c = (−0.240) × 0.430/(−0.298) × 100% = 34.63%]. This indicates that the predicted effect of family function on 34.63% of the predicted effect of loneliness was indirectly influenced through stigma. Table 3 Mediating effect model test of stigma Independent variable Loneliness Stigma Loneliness β t β t β t Family relationship −0.298 −5.632* −0.240 −4.456* −0.195 −3.969* Stigma — — — — 0.430 8.764* R2 0.089 0.055 0.264 F 31.717* 19.854* 57.965* Note: * indicates P < 0.01 Figure 1 Mediating effect model of stigma Discussion In this study, the family relationship score of breast cancer patients was found to be 7.24 ± 3.48, which is slightly lower than the findings of He et al.(12) Patients who were young or middle-aged, currently employed, had a high education level, and those within 1–3 years after surgery had poor family relationship. The reason may be that young and middle-aged women are often advancing in their careers, and highly educated patients tend to have higher-paid job. It is evident that young and middle-aged women, as well as highly educated patients, often serve as the main breadwinners of their family. They bear the responsibility of sustaining stable family dynamics and providing the things needed for family survival and development. Thus, when these individuals become ill, their family economic situation tends to deteriorate.(13) Patients within 1 to 3 years after surgery have a fear of cancer recurrence because they have to continuously undergo chemotherapy and radiotherapy as part of their follow-up.(14) Moreover, patients’ families may not fully understand the importance of caring for patients at home in the short term, thus leading to a lower level of family relationship. Patients with a high BMI, those who are married, and those who engage in regular exercise had better family relationship. This may be related to the fact that they have more opportunities to eat and communicate with their families and are more willing to perform physical exercise.(15) A good marital relationship is the basis for maintaining good family relationship, as patients can obtain help from their spouses when they encounter difficulties and receive support when they intend to pursue new activities or jobs.(16) In this study, we found that the mean loneliness score of the 327 breast cancer patients (44.76 ± 8.22) was negatively correlated with family relationship (r < 0.01), and that patients’ family relationship could directly contribute to loneliness. Breast cancer patients (especially those in active treatment after mastectomy) often present with poor physical imagery, such as missing asymmetrical breasts and breast cancer-related lymphedema (BCRL). When combined with the fear of cancer recurrence throughout survival, this can lead to a shift in patients’ family roles and behaviors, resulting in imbalance in the family system and weakened family relationship.(17, 18) The family relationship systems model theory suggests that family relationship is closely related to interfamilial relationships and interaction styles.(19) In a dysfunctional family environment, individuals may exhibit doubts about themselves and the world around them due to unmet psychological needs, develop anxiety, and exhibit behaviors changes such as avoidance and withdrawal, which can hinder their development of good interpersonal relationships and individual socialization and generate a sense of isolation.(20) Therefore, it is recommended that nursing workers should fully understand the patient’s family relationship structure (work status, marital status, etc.), promptly assess the patient’s family relationship status, and provide targeted care for their shortcomings and weaknesses in order to enhance the level of family relationship and reduce individual loneliness in breast cancer patients. In this study, we found that 327 breast cancer patients had an overall moderate-to-high stigma score of 60.30 ± 12.25. As a chronic disease, breast cancer has a relatively long treatment period, and the high cost of treatment tends to compromise the living standards of the patients’ family. Thus, patients are prone to having feelings of guilt and self-blame, which triggers a sense of shame. Also, the differences in behavioral awareness and economic level resulting from the differences in education level leads to the lack of resources for communication with the outside world, which, in turn, leads to loneliness among patients. This study showed that stigma partially mediated the effect between family relationship and loneliness in breast cancer patients, with the mediating effect accounting for 34.63% of the total effect. Patients with good family relationships can receive more encouragement and support from their families, and the emotional comfort and emotional guidance among family members will diminish the stigma associated with the patient’s disease treatment, thus prompting the patient to develop self-confidence and positive coping strategies, actively seek belonging resources, and thus reduce the feeling of loneliness.(21) Studies have shown that stigma, a negative psychological phenomenon, has an adverse impact on patients’ body and mind.(5) Reducing the experience of stigma does not only strengthen patients’ understanding of the disease but also helps them to adapt to the change of family roles, establish a new family division of labor and responsibility sharing pattern,(7) and to improve family functions. It can also improve the level of social participation, enhance social adaptability, and reduce loneliness.(4) Therefore, it is recommended that the state appropriately adjusts relevant policies to provide patients with more financial support and subsidies, while calling on the community to pay attention to breast cancer patients as a vulnerable group and form a support network between the hospital, family, and society.(22) Patients are encouraged to be bold in expressing themselves when they need more support. This will enable them to have a sense of security and belonging, identify better emotional self-regulation strategies, and thus reduce the sense of shame and isolation.(23) This study not only demonstrated the mediating role of stigma between family function and loneliness of breast cancer patients and clarified the relationship between the three, but also provided a basis for developing practical scientific health guidance programs and interventions for improving the mental health and quality of life of breast cancer patients. However, this study had some limitations. First, the degree of family relationship was not grouped hierarchically, and it is important to determine family relationship hierarchy in the future to facilitate an in-depth study. Second, due to the limitations of the study population, the generalizability of the mediating effect model are also limited, and it is necessary to expand the study population and conduct multicenter and longitudinal studies in the future to explore the trajectory changes of loneliness in the breast cancer group. Third, stigma was not fully mediated between family relationship and loneliness in breast cancer patients, and the R2 value was not high. Thus, further analysis need to be conducted in the future taking into account depression, self-perceived burden, social isolation, and other factors.(24, 25) Conclusion Breast cancer patients have higher levels of stigma and loneliness, and family relationship negatively predicts stigma and loneliness. Our findings also confirmed that stigma plays a partially mediating role between family relationship and loneliness in breast cancer patients. It is recommended that nursing workers should pay attention to family relationship due to its importance for patients’ recovery, increase intra-family resources to enhance the level of family resilience, and reduce stigma related to patients’ illness, thus alleviating the experience of loneliness. Acknowledgments This project was supported by the Key Research and Development Program of Anhui Province in 2018 (Project no. 1804H08020269); 2019 Fuyang City Health Commission scientific research Project (project no. FY2019-044).