Family Members' Experiences Caring for Patients With Advanced Head and Neck Cancer Receiving Tube Feeding: A Descriptive Phenomenological Study

Penner, Jamie L.; McClement, Susan; Lobchuk, Michelle; Daeninck, Paul

doi:10.1016/j.jpainsymman.2011.10.016

Cited by 78 publications

(227 citation statements)

References 27 publications

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“…Among these physical health issues, the role of the caregiver will require closer examination as managing feeding tubes, for example, can be a source of great distress for both HNSCC patients and their caregivers. 101,102 …”

Section: Methodsmentioning

confidence: 99%

The Older Adult With Locoregionally Advanced Head and Neck Squamous Cell Carcinoma: Knowledge Gaps and Future Direction in Assessment and Treatment

Maggiore

Zumsteg

BrintzenhofeSzoc

et al. 2017

International Journal of Radiation Oncology*Biology*Physics

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Older adults with squamous cell carcinomas of the head and neck (HNSCC) pose unique treatment and supportive care challenges to oncologists and other cancer care providers. The majority of patients with HNSCC present with locoregionally advanced (LA) disease, for which combined modality treatment integrating chemotherapy and radiation therapy is often necessary to maximize tumor control. However, applying these approaches to an older population with concomitant comorbidities and higher risk for functional impairments remains challenging, and is exacerbated by the paucity of studies involving older adults. The purpose of this paper is to identify knowledge gaps in the evaluation and management of older adults with HNSCC and their caregivers, particularly those undergoing concurrent chemoradiation, through a review of the literature conducted by clinicians, researchers, and patient advocates. The findings highlight the importance of a geriatric assessment and the therapeutic paradigms and challenges relevant to this population. Furthermore, we identify the need for additional research and interventions related to key supportive care issues that arise during and after treatment in older adults with LA-HNSCC. Based on our findings, we prioritized these issues to guide future patient-oriented research endeavors to address these knowledge gaps and thus better serve this growing patient population.

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Section: Methodsmentioning

confidence: 99%

The Older Adult With Locoregionally Advanced Head and Neck Squamous Cell Carcinoma: Knowledge Gaps and Future Direction in Assessment and Treatment

Maggiore

Zumsteg

BrintzenhofeSzoc

et al. 2017

International Journal of Radiation Oncology*Biology*Physics

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“…Essas consequências podem estar ligadas à maior carga de estresse, menor satisfação com a vida, perda de emprego, depressão, privação de liberdade, ruptura de vínculos, isolamento e diminuição da participação social. Ademais, há o medo de lidar com a morte e a perda do ente querido (3,6,7) . Em estudo com pacientes de câncer de cabeça e pescoço, foram apontados como papéis do cuidador: oferecer suporte emocional, transportar para os estabelecimentos de saúde, limpar a casa, fazer compras, cozinhar, prestar cuidados a noite e realizar higienização (8) .…”

Section: Introductionunclassified

“…Nota-se que esses cuidadores assumem múltiplos papéis que demandam tempo e dedicação. Além dessas responsabilidades e das repercussões psicossociais relacionadas ao diagnóstico de câncer, eles precisam aprender a lidar com a nutrição dos pacientes, muitas vezes tubodependente, cuidados especiais de higiene, cuidados com a traqueostomia e a comunicação, que pode estar prejudicada (6,9,10) . A ansiedade, o medo de perder o controle e a incerteza são sentimentos constantes no cenário do diagnóstico e do tratamento do câncer.…”

Section: Introductionunclassified

Ser cuidador de familiar com câncer de cabeça e pescoço

Honório

Ferreira

Cruz

et al. 2015

RBPS

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RESUMOObjetivo: Conhecer a percepção de cuidadores informais sobre o cuidar de um familiar acometido por neoplasia maligna de cabeça e pescoço. Métodos: Estudo qualitativo realizado no período de março a maio de 2014, no ambulatório de radioterapia do Centro de Alta Complexidade em Oncologia (CACON) do Hospital Universitário de Brasília (HUB)-Brasil, baseado em entrevista semiestruturada com nove cuidadores. Os dados foram submetidos à Análise de Conteúdo, sendo identificadas quatro unidades de significado: "Representação do câncer na família", "O cuidado visto como dívida, recompensa individual ou reconstituição do elo familiar", "Repercussões do câncer na vida pessoal do cuidador" e "Rede e apoio sociais utilizados pelos cuidadores". Resultados: Foram atribuídos ao câncer sentimentos de tristeza e surpresa diante do diagnóstico, bem como a ideia de castigo. O cuidar foi visto como satisfação pessoal, dever cumprido e oportunidade de reaproximação familiar. Sobrecarga e mudança na rotina foram funções alteradas. Religiosidade, troca de experiência na sala de espera e apoio institucional apareceram como estratégias de enfrentamento. Conclusão: A experiência de cuidar de familiar com câncer de cabeça e pescoço tem interferência direta na vida dos cuidadores. O acolhimento institucional ser apontado como uma estratégia dentro da rede social reforça a importância de integrar os cuidadores como parte significativa do plano de cuidados traçado pela equipe de saúde. Descritores

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“…HNC survivors and their caregivers face unique recovery challenges and caregiving tasks [9, 11, 8, 20, 19] and based on the complexity and variability in their experiences [13], may especially benefit from completing a comprehensive needs assessment and receiving a tailored care plan after treatment. In this study, we developed and pretested a tablet-based survivorship needs assessment planning tool.…”

Section: Discussionmentioning

confidence: 99%

“…There may be other possible challenges such as risky health behaviors [14, 15] and potentially unique post-treatment needs in the growing population of HNC survivors with human papilloma virus (HPV)-positive tumors [16–18]. Furthermore, the informal family caregivers of HNC survivors may have special needs after treatment when they take on unique roles and responsibilities such as wound care and assistance with speech and nutrition [19, 8, 20]. HNC survivorship interventions are therefore needed to assess and address survivor-caregiver needs at the end of treatment.…”

Section: Introductionmentioning

confidence: 99%

Development of a survivorship needs assessment planning tool for head and neck cancer survivors and their caregivers: a preliminary study

et al. 2017

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Purpose The purpose of this study was to characterize primary end-of-treatment challenges in head and neck cancer (HNC) to drive the development of a survivorship needs assessment planning (SNAP) tool and evaluate its acceptability and feasibility. Methods Using qualitative methods (focus groups, interviews), we identified physical, emotional and social post-treatment challenges from the perspectives of survivors (N=17), caregivers (N=14) and healthcare providers (N=14) and pretested the SNAP tool. After Advisory Board ratings and consensus, the tool was finalized. Results Survivors, caregivers and clinicians consistently highlighted the importance of assessing symptoms and functional abilities (e.g., dry mouth, speech/swallowing difficulties, weight loss), health behaviors (e.g., smoking, alcohol), emotional concerns (e.g., depression, isolation, nutritional distress) and social challenges (e.g., support, finances). Caregivers were overwhelmed and intensely focused on survivors’ nutrition and trach/feeding tube care while clinicians emphasized financial and access concerns. Most participants were enthusiastic about the tool and directed a flexible care plan design due to variability in dyad needs. Over 75% reported high comfort using and navigating questions on a tablet and were in strong agreement that the care plan would help families practically and emotionally. Coordination of survivorship visits with follow-up care was critical to address travel and time barriers. While survivors and clinicians recommended waiting 1–6 months after treatment, caregivers preferred earlier survivorship visits. Conclusions Results pinpointed optimal end-of-treatment domains for routine assessment and support the feasibility of implementing a SNAP tool in the clinic. Implications for Cancer Survivors Capitalizing on technology to direct HNC survivorship care is promising.

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Family Members' Experiences Caring for Patients With Advanced Head and Neck Cancer Receiving Tube Feeding: A Descriptive Phenomenological Study

Cited by 78 publications

References 27 publications

The Older Adult With Locoregionally Advanced Head and Neck Squamous Cell Carcinoma: Knowledge Gaps and Future Direction in Assessment and Treatment

The Older Adult With Locoregionally Advanced Head and Neck Squamous Cell Carcinoma: Knowledge Gaps and Future Direction in Assessment and Treatment

Ser cuidador de familiar com câncer de cabeça e pescoço

Development of a survivorship needs assessment planning tool for head and neck cancer survivors and their caregivers: a preliminary study

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