Individual difficulties and resources – a qualitative analysis in patients with advanced lung cancer and their relatives

Abstract

PurposeLung cancer is a disease with a high percentage of patients diagnosed in an advanced stage. In a situation of palliative treatment, both patients and their relatives experience diverse types of distress and burden. Little research has been done to identify the individual difficulties and resources for patients with advanced lung cancer and their relatives. Especially, standardized questionnaire-based exploration may not assess the specific distressing issues that pertain to each individual on a personal level. The purpose of this qualitative study is to explore and compare individual difficulties and resources for lung cancer patients and their relatives within the palliative care context.MethodsData were collected by qualitative interviews. A total of 18 participants, nine patients diagnosed with advanced lung cancer (International Classification of Diseases, tenth edition, diagnosis C-34, stage IV) starting or receiving palliative treatment and nine relatives, were interviewed. Data were interpreted through qualitative content analysis.ResultsWe identified four main categories of difficulties: communication and conflicts, home and everyday life, thinking about cancer, and treatment trajectory. In general, difficulties were related to interpersonal relationships as well as to impact of chemotherapy. Family, professional caregivers, and social life were significant resources and offered support to both patients and relatives.ConclusionResults suggest that patient and relative education could reduce difficulties in several areas. Patients seem to struggle with the fear of not having any perspective in therapy. Relatives seem to experience helplessness regarding their partner’s deterioration and have to handle their own life and the care work simultaneously. The most important resource for both patients and relatives is their family. In addition, professional lung cancer nurses support relatives in an emotional and organizational way. Intense supportive care for relatives should be standardized.

A Personal Electronic Health Record: Study Protocol of a Feasibility Study on Implementation in a Real-World Health Care Setting

“…This can lead to inefficiencies and may hinder coordination and continuity of care [1,2]. However, the health information exchange between different care settings and health systems is a key issue for a multidisciplinary approach in chronic care [3].…”

A longitudinal communication approach in advanced lung cancer: A qualitative study of patients’, relatives’ and staff's perspectives

“…For this paper, we limit the results to questions concerning communication. Further results are published separately (Sparla et al, 2016(Sparla et al, , 2017. We identified two main categories: communication prior to disclosure of diagnosis and communication during further treatment.…”

The Heidelberg Milestones Communication Approach (MCA) for patients with prognosis <12 months: protocol for a mixed-methods study including a randomized controlled trial

“…Our previous studies in phase 1 included a qualitative exploration of patients’ and caregivers’ experiences over the disease trajectory and the assessment of healthcare professionals’ views of a hypothetical structured and forward-thinking communication approach [ 5 , 26 , 27 ]. Based on these results, Heidelberg MCA was developed as a complex intervention: (a) to address the communication needs of patients and caregivers, (b) to improve continuity of care, (c) to improve individual quality of life of patients and their caregivers, (d) to foster shared decision-making including end-of-life decisions, and (e) to enhance communication competencies and team processes of the interprofessional oncology team.…”

“…This introduces standardized steps of communication at turning points of treatment, such as first disclosure of diagnosis, disease progression, and transition to best supportive care. Based on findings from interviews with patients and caregivers and focus groups with healthcare professionals, a structured longitudinal concept has been developed: the Heidelberg Milestones Communication Approach (MCA) [ 5 , 26 , 27 ].…”

“…Metastatic lung cancer has been used as a model disease in developing MCA. Not only is there a limited prognosis with a median survival of less than 12 months but it is also associated with a substantial existential uncertainty and a high symptom burden with detrimental impact on patients and caregivers [ 27 , 28 ]. However, institutional strategies for implementing longitudinally structured communication concepts such as MCA and knowledge about the effects of implementation are still lacking.…”