"Suddenly we have hope that there is a future": two families' narratives when a child with spinal muscular atrophy receives a new drug

被引：1

作者：

Hjorth, Elin ^{[1
]}

Lovgren, Malin ^{[1
,2
]}

Kreicbergs, Ulrika ^{[1
,2
]}

Sejersen, Thomas ^{[3
]}

Asaba, Eric ^{[4
,5
,6
]}

机构：

[1] Ersta Skondal Bracke Univ Coll, Palliat Res Ctr, Dept Hlth Care Sci, Box 11189, S-10061 Stockholm, Sweden

[2] Karolinska Univ Hosp, Karolinska Inst, Childhood Canc Res Unit, Dept Womens & Childrens Hlth Paediat Oncol & Haem, Stockholm, Sweden

[3] Karolinska Univ Hosp, Astrid Lindgren Childrens Hosp, Karolinska Inst, Dept Womens & Childrens Hlth,Paediat Neurol, Stockholm, Sweden

[4] Karolinska Inst, Dept Neurobiol Care Sci & Soc NVS, Div Occupat Therapy, Stockholm, Sweden

[5] Stockholms Sjukhem Fdn, Res Educ Dev & Innovat Unit, Stockholm, Sweden

[6] Lund Univ, Dept Hlth Sci, Occupat Therapy & Occupat Sci Res Grp, Lund, Sweden

来源：

INTERNATIONAL JOURNAL OF QUALITATIVE STUDIES ON HEALTH AND WELL-BEING | 2021年 / 16卷 / 01期

关键词：

Spinal muscular atrophy; neuromuscular disease; families; narrative inquiry; hope; resilience; CHRONIC ILLNESS; SHAM CONTROL; PARENTS; LIFE; RESILIENCE; EXPERIENCE; NUSINERSEN; DISABILITIES; PERSPECTIVE; ADOLESCENTS;

D O I：

10.1080/17482631.2021.1904722

中图分类号：

R1 [预防医学、卫生学];

学科分类号：

1004 ; 120402 ;

摘要：

Purpose: This study aims to explore negotiations of hope in everyday life for families where a child with spinal muscular atrophy (SMA) has received a new drug treatment. Methods: A narrative design was used, drawing on interviews and participant observations in two families with children with SMA, types 1-2, to situate family experiences of hope in everyday life. Narrative analysis was used on the data. Results: Results are presented as stories, with details about situations and contexts, to illustrate how hope was used by families to reconstruct their own family narratives. Conclusions: Hope was negotiated and struggled with in different ways by different family members, but contributed to each person's own way of dealing with the disease and outlook for the future.

引用

页数：10

共 58 条

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