The haematopoietic stem cell transplant survivors’ sense of coherence about their experiences: a qualitative study

Sharin, Umairah Bte Mohamed; Hwang, Chung Cheng Jordan; Ang, Wei How Darryl; Lopez, Violeta

doi:10.1007/s00520-019-05273-3

Cited by 9 publications

(12 citation statements)

References 44 publications

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“…The themes generated from the patients' written accounts of their experiences were the uncertainty regarding the transfer to LTFU care, reassurance gained from remaining on a healthcare pathway, e cient and effective continuous relationships with healthcare professionals and the lack of information and expectation surrounding late-effect screening practices. The ndings are consistent with the results of previous studies, that close personal relationships with clinics were essential to receiving personal and attentive care to maintain health and that for some patients fear of recurrence and uncertainty was associated with monitoring practices [19][20][21]. However, the patients' accounts depict the complexities, uncertainty, and psychological impact on HSCT recipients as they navigate the LTFU healthcare pathway to ensure continuity of care.…”

Section: Discussionsupporting

confidence: 87%

“…Literature observing the LTFU monitoring from recipients' perspectives post-2015 is limited, with only three qualitative studies identi ed [19][20][21]. All three studies found that recipients established close relationships with clinical personnel, which was seen as a crucial element to receiving personal and attentive care, as well as maintaining health.…”

Section: Introductionmentioning

confidence: 99%

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The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: A qualitative exploration.

Bell

Swainston

2023

Preprint

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Purpose: Despite a haematopoietic stem cell transplant (HSCT) being a potentially curative treatment option for malignant and non-malignant disorders, patients may develop complex physical and psychological post-transplant complications. Consequently, transplant centres remain responsible for patients' life-long monitoring and screening practices. We sought to describe how HSCT survivors experience long-term follow-up (LTFU) monitoring clinics in England. Method: A qualitative approach was adopted with data collected from written accounts. Seventeen transplant recipients were recruited from across England: the data was analysed using thematic analysis. Results: Data analysis elicited four themes: transfer to LTFU care: “will there be a change in my care, or will appointments just become less frequent?”; Care Coordination: “it is good to know I am still in the system”; Relationship continuity: “a good knowledge of me, my health and what is important to me”; and Late-effects Screening: “there was not much information about what to expect or be aware of”. Conclusions: HSCT survivors in England experience uncertainty and lack of information regarding the transfer from acute to long-term care and clinic screening practices. However, patients gain reassurance from remaining on a healthcare pathway and maintaining relationships with healthcare professionals. Implications for Cancer Survivors: HSCT recipients entering LTFU monitoring clinics are a growing population of cancer survivors. Understanding and acknowledging this cohort of patients' needs may inform the development of tailored support to help patients navigate the complicated healthcare pathway.

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Section: Discussionsupporting

confidence: 87%

Section: Introductionmentioning

confidence: 99%

The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: A qualitative exploration.

Bell

Swainston

2023

Preprint

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“…Numerous researchers have demonstrated the effects of HSCT on patients' interpersonal relationships and social networks. 44 , 45 Firstly, their social circle shrinks, and some survivors face various challenges like discrimination, career derailment, job insecurity, and mental limitations as a result of their illness. These challenges make them to withdraw from social circles.…”

Section: Discussionmentioning

confidence: 99%

Mediating effect of ill perception on the relationship between social constraints and fear of cancer recurrence among adolescent and young adult survivors who underwent hematopoietic stem cell transplantation

Shen

Xie

Ruan

et al. 2022

Asia-Pacific Journal of Oncology Nursing

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“…Researchers have investigated the impact of HSCT on quality of life, life experiences and long-term effects, living with GVHD, spirituality, coherence, self-management, stress and coping strategies, healthcare and nancial needs, and returning to work. [8][9][10][11][12][13][14][15][16][17][18] Findings from these studies included negative experiences and restrictions in survivorship, 8,11 job insecurity and decline in work capacity. 9,14 However, they also documented positive experiences including cognitive coping, 17 acknowledging the meaningfulness of the HSCT experience, 15,18 reliance on spiritual or religious resources, 10 progressively learning self-management, 16 as well as valuing the importance of participating in health decision-making.…”

Section: Introductionmentioning

confidence: 99%

Survivorship Experiences of Chinese Hematopoietic Stem Cell Transplantation Survivors: A Qualitative Study

Ruan

Qian

Zhuang

2023

Preprint

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Background: The number of global hematopoietic stem cell transplantation (HSCT) survivors is increasing rapidly. Survivors encounter many challenges, but studies regarding survivorship experiences in China are scarce. Objective: This study aimed to explore the survivorship experiences of Chinese patients with hematological cancers after HSCT and to describe the impact of HSCT on survivors’ lives. Methods: Descriptive qualitative research was employed. Purposive sampling was used to recruit HSCT survivors who were treated in Zhejiang Province from June 2021 to June 2022. Audio-recorded semi-structured interviews were conducted, transcribed verbatim, and analyzed via conventional content analysis. Results: Fifteen HSCT survivors aged 18-59 years participated in this study. Four themes and 11 subthemes emerged: (1) transplant being harder than you thought (body function impaired, forced to modify diet, disturbed by survivorship uncertainty), (2) difficulty blending into circles (limited activity space, suffering from discrimination), (3) adjusting value judgment (health being a top priority, contributing to family as much as possible, feeling worthless), and (4) still being the lucky one (recovered better than others, genuine relationships acquired, self-improvement achieved). Conclusion: This study offers insight into subjective survivorship experiences of patients with hematological cancers post-HSCT within a Chinese sociocultural context. It also presents changed perceptions of HSCT, life alterations, adjusted value judgments, and positive self-evaluation since treatment. Implications for Practice: Nurses can provide person-centered survivorship care based on understanding the survivorship experiences and needs of Chinese HSCT survivors. Intervention programs and informational materials should be developed to address difficulties encountered by Chinese HSCT survivors.

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The haematopoietic stem cell transplant survivors’ sense of coherence about their experiences: a qualitative study

Cited by 9 publications

References 44 publications

The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: A qualitative exploration.

The lived experience of long-term follow-up clinical care for haematopoietic stem cell recipients in England: A qualitative exploration.

Mediating effect of ill perception on the relationship between social constraints and fear of cancer recurrence among adolescent and young adult survivors who underwent hematopoietic stem cell transplantation

Survivorship Experiences of Chinese Hematopoietic Stem Cell Transplantation Survivors: A Qualitative Study

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