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Abstrak :
Caregiver keluarga memegang peranan penting dalam perawatan pasien kanker stadium lanjut yang mengalami masalah akibat kanker dan terapinya. Penelitian bertujuan menggali pengalaman caregiver dalam konteks perawatan. Metode penelitian kualitatif dengan pendekatan fenomenologi deskriptif. Pengumpulan data dengan wawancara mendalam pada 5 partisipan sesuai kriteria inklusi. Temuan memberikan 7 tema utama, yaitu: reaksi caregiver saat mengetahui diagnosa kanker stadium lanjut, pemahaman caregiver tentang kanker, caregiver peran yang melelahkan, caring pada pasien kanker stadium lanjut, mendampingi pasien berobat, beban caregiver pasien kanker, harapan caregiver. Kesimpulan adanya pemahaman caregiver yang kurang dalam merawat pasien kanker mengakibatkan timbulnya distress akibat beban peran. Disarankan pemberian informasi edukasi kanker, kenyamanan caregiver sehingga dapat meningkatkan kualitas hidup pasien kanker stadium lanjut. ...... Family caregivers play an important role in the hospitalization of advanced cancer patient who experience problems due to cancer and its treatment. The study aimed to explore the experience of caregivers in helping patient during hospitalization. Qualitative research method with a descriptive phenomenological approach was used. Collecting data done by in-depth interviews on 5 participants according to inclusion criteria. The findings provided seven main themes, namely: caregiver's reaction confirmed advanced cancer diagnosis, caregiver understanding of cancer, a grueling caregiver role, caring for patients with advanced cancer, treatment with the patient, caregiver burden of a cancer patient, caregiver expectations. As the conclusion, lacking of understanding on caregiver in caring cancer patients has resulted in distress due to the burden of roles. Suggested providing cancer education information, caregiver convenience so as to improve the quality of life for patients with advanced cancer.

Abstrak :
Meningkatnya prevalensi kanker terutama yang sudah dalam kondisi terminal membutuhkan penatalaksanaan komprehensif melalui perawatan paliatif yang mana pasien sangat didorong untuk dapat terlibat mengambil keputusaan mandiri. Penelitian ini bertujuan untuk mengeksplorasi esensi atau makna dari pengalaman pasien dalam pengambilan keputusan perawatan paliatif di rumah. Penelitian ini menggunakan metode kualitatif dengan pendekatan fenomenologi dengan metode pemilihan partisipan menggunakan teknik puposive sampling. Sampel dalam penelitian ini sebanyak 10 partisipan pasien kanker stadium lanjut advanced cancer. Pengambilan data dengan teknik indepth interview dengan analisa data menggunakan metode Collaizi. Hasil penelitian menunjukkan enam tema yang signifikan mengambarkan dimanika pasien kanker selama proses pengobatan hingga pengambilan keputusan tempat perawatan paliatif. Tema ndash; tema tersebut yaitu : nyeri dan sedih yang berkepanjangan, dampak nyeri terhadap perubahan aspek kehidupan, alasan pemilihan tempat perawatan paliatif, pengambilan keputusan dengan melibatkan keluarga, kebutuhan pasien akan perawat paliatif dalam menjalani perawatan di rumah serta menjalani akhir kehidupan end of life di rumah dengan tenang. Diharapkan penelitian ini menjadi acuan bagi perawat dalam melakukan pendekatan terapeutik dengan memperhatikan karakteristik partisipan, meningkatkan pengetahuan serta kemampuan berkomunikasi untuk mengadvokasi dan menginformasikan program perawatan paliatif di rumah secara jelas sehingga tidak menimbulkan keraguan pada pasien untuk menerima pemulangan dari rumah sakit dan menerima perawatan paliatif di rumah. Selain itu, perlu adanya strategi dari pemerintah untuk mengoptimalkan program paliatif melalui perawatan paliatif berbasis home care diberbagai daerah di wilayah Indonesia. ...... Increased cancer prevalence especially in terminal condition needs a comprehensive management approach through a palliative care in which patient is very encouraged to be involved in an independent decision making of, especially, palliative care facility. The study intends to explore in depth the essence of patient's experience in decision making of palliative care at home. It uses qualitative method with phenomenological approach. The participants were selected by using purposive sampling technique. They are 10 patients with terminal cancer. The data were collected by using in depth interview technique and analyzed by using Collaizi method. The result shows six themes which significantly describe the dynamic of patients with cancer from medication process to decision making of palliative care facility. The teams are prolonged pain and sadness, painful effects on life changing aspects, palliative care selection reasons, family involvement decisions, palliative care needs in home care and end of life at home quietly. The study is expected to be a reference for nurses in conducting therapeutic approach by considering participant's characteristics. It is also expected to improve nurse's knowledge and communication skill in advocating and clearly informing palliative care purposes and program at home. Thus, patients do not have doubt to receive discharge from hospital and palliative care at home. In addition, there needs to be a strategy from the government to optimize palliative programs through palliative care based on home care in various regions in Indonesia.Keywords patient with terminal cancer, decision making, palliative care at home