Yasuko Igai

Aims: This study evaluated the acceptability of a dignity‐centred palliative care programme for people with idiopathic pulmonary fibrosis by converging perceptions of living with idiopathic pulmonary fibrosis qualitative data and quantitative data.Design: The qualitative‐driven mixed methods research addressed the study aim by using a convergent design. This single arm, non‐randomized study used purposive sampling.Methods: Interviews with 12 stable outpatients with IPF provided qualitative data. Their quantitative data were from six scales: self‐esteem, health‐related quality of life, anxiety, depression, dyspnoea, cough and programme satisfaction. Intervention was three educational modules: symptom management, enhancing daily activities and life reviews.Results: Semi‐structured interviews yielded eight categories. Self‐esteem was not statistically significantly changed. Dyspnoea symptoms improved significantly. Participants (n = 9) holding positive attitudes for living with idiopathic pulmonary fibrosis, had improved lifestyle behaviour and improved or maintained self‐esteem. The meta‐inference regarding idiopathic pulmonary fibrosis perceptions were related to changes in self‐esteem.

Aim: This concept analysis describes attributes, antecedents, and consequences of dignity‐centered care for people with chronic progressive disease.Methods: Rodgers' method of concept analysis was used to clarify the concept's defining attributes. Databases searched were PubMed, MEDLINE, EMBASE, CINAHL, and Ichushi‐Web by NPO Japan Medical Abstracts Society, in English and Japanese, from 1976 to 2017. The combination of MESH and keywords used were (dignity), and (care), and (chronic disease) or (chronic illness).Results: Three antecedents were identified: loss of physical function and reduced psychological capacity, independence and role; living with uncertainty of illness; and multi‐faceted distress. There were four attributes identified: bolstering self‐esteem, reducing multi‐faceted distress, continued relationship, and protecting individual's rights. Four consequences were identified: improved self‐esteem, relief from multi‐faceted distress, deepening the purpose and meaning of life, and maintaining and/or improving the quality of life.Conclusion: Dignity‐centered care is defined as: care that results in improvement of self‐esteem, deepens purpose and meaning of life, maintains and improves quality of life and provides relief from multi‐faceted distress. This happens through protecting the individual's rights, bolstering self‐esteem and reducing multi‐faceted distress through continued relationships with family, friends, and providers. There is a need for continued involvement with those individuals who have lost physical function, psychological capacity, autonomy, and role. They live with uncertainty of illness and exhibit multi‐faceted distress. This concept is a fulcrum for patient and nurse reciprocity enabling both to realize greater integrity and respect, and is useful for nursing practice and research.

Aim To evaluate whether non-pharmacological nursing interventions improve the quality of life, including both physical and psychosocial states, for patients with idiopathic pulmonary fibrosis, compared to patients receiving the usual care visit or not receiving routine nursing. Methods A comprehensive search was conducted of the following electronic databases in English and Japanese: PubMed, MEDLINE, EMBASE, CINAHL, The Cochrane Central Register Controlled Trials (CENTRAL), NPO Japan Medical s Society's Ichushi - Web database, National Institute of Informatics' Scholarly and Academic Information Navigator (CiNii) database, Grants-in-Aid for Scientific Research (KAKEN) database, and Database of Health Labor Sciences Research Grants. The keywords were as follows: [interstitial lung disease], [interstitial pulmonary fibrosis], [idiopathic pulmonary fibrosis] AND [nurse OR nurses' role OR nursing]. A search method was used based on the eligibility criteria without including words, such as "randomized controlled trial" (RCT). Three categories defined the search parameters: (i) patients with idiopathic pulmonary fibrosis; (ii) non-pharmacological nursing interventions; and (iii) RCT. Results Three-hundred-and-ninety-four articles were reviewed. Two articles met all the eligibility criteria. The nursing interventions were "disease management program" and "community case conference," both involving nurse specialists. The quality-of-life scores decreased after 6 weeks of intervention with the disease management program. The quality-of-life scores improved after 4 weeks of intervention with the community case conferences. The risk of bias for these two studies was high. Conclusion There was limited evidence of non-pharmacological nursing interventions improving the quality of life of patients with idiopathic pulmonary fibrosis.

Aim: The aim of this study was to examine the reported characteristics of extant studies on palliative care for patients with idiopathic pulmonary fibrosis.Design: Narrative review.Methods: A comprehensive search of the following electronic databases in English and Japanese commenced from 2002 ‐ December 2017. Eligibility criteria was determined by the inclusion and exclusion criteria.Results: Nineteen articles were eligible. The characteristics of palliative care for patients with idiopathic pulmonary fibrosis were symptoms relief, start time of palliative care and palliative care needs of patients and care partners. Also, patients' education of disease management including advanced care planning and developing a palliative care system by the healthcare provider including multidisciplinary professional teams was identified. The care provided was a “care conference” and integrated palliative care was carried out in the patient's home. The majority of the studies were qualitative and retrospective in design. The palliative care system and the development of palliative care were limited.

Aim: This study aimed to extract patient narratives regarding the end‐of‐life trajectory of their self‐care and coping experiences as patients with idiopathic pulmonary fibrosis and to use meta‐ethnography to discover common metaphors of their experience in order to inform the development of nursing interventions.Methods: A comprehensive search of qualitative research using electronic databases, in English and Japanese, regarding patients with IPF, identified four articles. The meta‐ethnography approach followed seven steps, which provided a synthesis of the phenomena from both comparative and cumulative analyses of the qualitative data.Results: Seven key concepts and metaphors were synthesized: (i) an extended period before obtaining a diagnosis (“Waiting for the other shoe to drop”); (ii) suffering as the pathway of illness (“Gloom and doom”); (iii) the burden of the symptoms and loss of independence (“Staggering under the load”); (iv) acceptance and living with the restrictions of home oxygen therapy (“A double‐edged sword”); (v) changes in the family role (“All in the same boat”); (vi) existential suffering (“Dead‐end streets and rays of hope”); and (vii) challenges to maintain independent living (“Making the best of it”). Reciprocal, refutational, and line‐of‐argument modes of synthesis revealed the relationships of the metaphors. Meta‐ethnography provided a mechanism for a cumulative knowledge base for necessary nursing interventions.Conclusions: The critical nursing interventions were: the relief of symptoms, particularly dyspnea and cough; coordinating lifestyle changes; providing psychological support for living with an illness beginning from the time of diagnosis; and carefully starting the end‐of‐life discussions with patients and families.

目的：特発性間質性肺炎患者が認知する病気の不確かさの特徴及び関連要因を明らかにする． 方法：40歳以上で安定期にある特発性間質性肺炎の外来患者を対象に，病気の不確かさを「療養の場を問わず使用できる病気の不確かさ尺度；UUIS」（26項目6下位尺度，得点範囲26～130点，得点が高いほど不確かさの認知が高い．）により調査した．また，特発性肺線維症群とそれ以外の群とを比較し，修正MRC，FVCを独立変数とした重回帰分析を行った． 結果：51例を登録し，特発性肺線維症は13例であった．年齢71.3 ± 8.7歳，男性40名（78%）で，UUIS総得点の平均値84.7 ± 20.0であった．多変量解析では，修正MRCが【闘病力への自信の揺らぎ】への不確かさに関連していた． 結論：特発性間質性肺炎患者が認知する不確かさは，呼吸困難感が【闘病力への自信の揺らぎ】の不確かさに関連しており，症状緩和に加えて心身両面への援助が必要である．