Narrative Interview for the Identification of Supportive Care Needs for Patients with Amyotrophic Lateral Sclerosis: An ethical analysis and pilot study Open Access

Drewry, Kelsey Marie (2017)

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Amyotrophic lateral sclerosis (ALS) is a neurodegenerative disease that causes patients to progressively lose control of voluntary muscles responsible for movements like chewing, walking, talking, and breathing. No cure exists and disease progression is highly variable. Due to the severity of symptoms and their impact upon patient and caregiver quality of life, the need for palliative and supportive care services for patients with ALS has been clearly identified. However, recent studies suggest a need to tailor these services to the needs of patients with neurological disorders, but little research has been published to this effect for ALS. This paper discusses the ethics of palliative and supportive care, their intersection with narrative ethics, and a proposed research method that integrates patient-centered principles from each of these disciplines to elicit care needs from patients' stories of their disease experience. The paper also describes a pilot study to test the methodology of illness narrative interview and thematic analysis to identify supportive and palliative care needs for patients with ALS and their caregivers. Ten patient and family groups with ALS functional rating scores between 27-44 participated in a two-tiered, semi-structured illness narrative interview. Grounded theory guided the thematic analysis of interview transcripts. Sixty-one themes emerged and were grouped into two distinct genres, six domains, and eighteen categories. All patients discussed the importance and helpfulness of the love and support of their family. Faith communities and spiritual practices, maintaining a positive outlook, and altruistic action were also amongst the most predominant themes in the "Expressed Needs" genre. Most prevalent in the "Observed and Experienced Changes" genre were themes of appreciating the value of life and time, thinking about death and dying, and concern for the wellbeing of family. The most commonly identified unmet care need was psychological support for depressive symptoms. The multifaceted needs expressed by participants cohere with the multidisciplinary approach of supportive and palliative care and were well elicited by the narrative interview approach. The results of this pilot study suggest that illness narrative interview and thematic analysis may be utilized effectively to elicit palliative and supportive care needs.

Table of Contents

Chapter 1: Understanding Palliative and Supportive Care 1

Chapter 2: Ethics and Narrative in Palliative and Supportive Care 27

Chapter 3: Rationale and Methodology 52

Chapter 4: Results 60

Chapter 5: Discussion 75

Appendix 99

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