scholarly journals “I don’t take for granted that I am doing well today”: a mixed methods study on well-being, impact of cancer, and supportive needs in long-term childhood cancer survivors

2021 ◽  
Author(s):  
Manya Jerina Hendriks ◽  
Nathalie Hartmann ◽  
Erika Harju ◽  
Katharina Roser ◽  
Gisela Michel
Keyword(s):  
Psychological Distress ◽  
Mixed Methods ◽  
Supportive Care ◽  
Childhood Cancer ◽  
Unmet Needs ◽  
Qualitative Interviews ◽  
Childhood Cancer Survivors ◽  
Mixed Methods Study ◽  
Care Needs

Abstract Purpose With increasing numbers of childhood cancer survivors (CCS), it is important to identify the impact of cancer and CCS’ needs for support services that can mitigate the long-term impact on psychosocial wellbeing, including health-related quality of life (HRQOL). We aimed (1) to describe survivors’ wellbeing, impact of cancer, and supportive care needs and (2) to determine how socio-demographic or clinical characteristics and impact of cancer relate to survivors’ unmet needs. Method In this mixed methods study, a quantitative survey was used to assess HRQOL, psychological distress, impact of cancer, and supportive care needs. Qualitative interviews were conducted to explore the meaning of wellbeing, health, and impact of cancer. Results Overall, 69 CCS participated in the survey of which 28 participated in qualitative interviews (aged ≥ 18 years, diagnosed with cancer ≤ 18 years). Few CCS (13%) reported poor physical HRQOL, but almost half reported poor mental HRQOL (49%) and psychological distress (42%). Health was considered to encompass both: physical and emotional aspects of wellbeing. Cancer positively impacted CCS’ ability to care and attitude towards life, whereas relationships and insurance were negatively impacted. Risks for unmet needs increased in CCS with self-reported low health status, late effects, psychological distress, with older age at study or longer time since end of treatment. Conclusion In our study, many CCS experienced various psychosocial, psychological and informational unmet needs, indicating that survivors’ needs are currently not duly addressed. Current efforts to provide supportive psychosocial care in Switzerland should be further operationalized to provide adequate support.

QOLP-30. LONG-TERM UNMET SUPPORTIVE CARE NEEDS OF TYA CHILDHOOD BRAIN TUMOUR SURVIVORS AND THEIR CAREGIVERS: A CROSS-SECTIONAL SURVEY

2021 ◽  
Vol 23 (Supplement_6) ◽  
pp. vi189-vi189
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-WIlliam ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Long Term Follow Up

Abstract INTRODUCTION The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. TYAs are a unique patient cohort with specific challenges and vulnerabilities differing from children or older adults. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL).This is the first study to collect quantitative data about needs in this survivorship group. METHODS Participants were recruited from long-term follow-up clinics (in three National Health Service Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13-30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short-Form and Paediatric Functional Assessment of Cancer Therapy – Brain (Peds-FACT-Br). While caregivers completed the SCNS-Partners and Caregivers (SCNS-P&C) and the Caregiver Quality of Life Index–Cancer (CQOLC). RESULTS In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (±8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (±12.3) unmet needs. Again, the greatest number of unmet needs were observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis, and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Psychological support appears to be the biggest gap in care. Understanding unmet needs and recognising what services are required is critical to improving quality of long-term survival.

A Mixed-Methods Study of Unmet Supportive Care Needs Among Head and Neck Cancer Survivors

2019 ◽  
Vol 42 (1) ◽  
pp. 67-78 ◽  
Author(s):  
Winnie K.W. So ◽  
Cho-Lee Wong ◽  
Kai-Chow Choi ◽  
Carmen W.H. Chan ◽  
Joanne C.Y. Chan ◽  
...  
Keyword(s):  
Head And Neck Cancer ◽  
Mixed Methods ◽  
Supportive Care ◽  
Cancer Survivors ◽  
Head And Neck ◽  
Neck Cancer ◽  
Mixed Methods Study ◽  
Supportive Care Needs ◽  
Care Needs

scholarly journals Long-term unmet supportive care needs of teenage and young adult (TYA) childhood brain tumour survivors and their caregivers: a cross-sectional survey

2021 ◽  
Author(s):  
Emma Nicklin ◽  
Galina Velikova ◽  
Adam Glaser ◽  
Michelle Kwok-Williams ◽  
Miguel Debono ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Care Needs ◽  
Psychological Domain ◽  
Long Term Follow Up

Abstract Introduction The supportive care needs of long-term childhood brain tumour survivors, now teenagers and young adults (TYAs), and their caregivers are largely unknown. We aimed to describe their supportive care needs and explore associations between needs and quality of life (QoL). Methods Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, ≥ 5 years from diagnosis, currently aged 13–30, and their primary caregivers. Survivors completed the Supportive Care Needs Survey (SCNS) Short Form and caregivers the SCNS-Partners & Caregivers, alongside validated QoL questionnaires (Peds-FACT-Br and CQOLC). Results In total, 112 individuals (69 survivors/43 caregivers) participated. Survivors reported on average 9.4 (± 8.5) unmet needs. Needs were greatest in the psychological domain, with anxiety (60.3%), uncertainty about the future (50.7%) and feeling down and depressed (48.5%) most commonly reported. Caregivers reported on average 12.4 (± 12.3) unmet needs. Again, the greatest number of unmet needs was observed in the psychological domain. Many caregivers also reported information needs around financial support/government benefits (42.9%) and possible survivor fertility problems (42.9%). Multivariable linear regression analysis showed that female survivors, unemployed survivors, survivors further away from diagnosis and single caregivers were more likely to report unmet needs. More unmet needs were significantly associated with poorer QoL in survivors and caregivers. Conclusion This research provides leads to improving supportive care and long-term follow-up services. Psychological support represents the biggest gap in care. Understanding unmet needs and recognising what services are required are critical to improving quality of long-term survival.

SPLIT ENZ: Survivorship of Patients post Long Intensive care stay, Exploration/Experience in a New Zealand cohort (A mixed methods study protocol) (Preprint)

2021 ◽  
Author(s):  
Lynsey Sutton-Smith ◽  
Elliot Bell ◽  
Susanna Every-Palmer ◽  
Mark Weatherall ◽  
Paul Skirrow
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
New Zealand ◽  
Critical Illness ◽  
Unmet Needs ◽  
Mixed Methods Study ◽  
Long Term Outcomes ◽  
Published Research

BACKGROUND ‘Post Intensive Care Syndrome’ (PICS) was defined by the Society of Critical Care Medicine in 2012 with subsequent international research highlighting the poor long-term outcomes, reduced quality of life, and ongoing impairments, activity limitations, and participation restrictions for survivors of critical illness. However, to date, there has been no published research about long-term outcomes for New Zealand survivors of critical illness. OBJECTIVE This mixed methods study will be the first to explore long-term outcomes after critical illness in New Zealand. It will also be done in the context of the global COVID pandemic. The primary objectives are to describe and quantify symptoms and disability in survivors of critical illness, to explore possible risk factors for their development, and to identify longer-term unmet needs for those who survive for a year. METHODS This will be a mixed methods study. There will be a prospective cohort study of 100 critically ill patients followed up one, six- and 12-months after hospital discharge. The primary outcome for the cohort study will be disability assessed with the World Health Organization’s Disability Assessment Scale: WHODAS 2.0. Secondary outcomes will focus on mental health using the Hospital Anxiety and Depression scale (HADS) and the Impact of Events Scale-revised (IES-r), cognitive function using the Montreal Cognitive Assessment (MOCA- blind), and Health related Quality of Life by the EQ-5D-5L. A second element of the study will use qualitative grounded theory methods to explore patients’ experiences of recovery, highlight their unmet needs and develop a model of barriers and facilitators to coping. This will use a sample from the main cohort with interviews conducted six months after discharge. RESULTS This study has received full ethics approval from the New Zealand Northern A Health and Disability Ethics Committee on the 16/8/21 (21/NTA/107) and has been registered with ANZCTR on 5/10/21 (12621001335886). SPLIT ENZ is due to start recruitment in early 2022 and will continue recruitment for up to two years aiming to enroll approximately 125 patients. Data collection is estimated to be completed by 2024–20255 and will be published once all data is available for reporting. CONCLUSIONS Although International research identifies the prevalence of PICS and the extent of disability in survivors of critical illness there is no published research in New Zealand. Research in this field is particularly pressing in the context of COVID, an illness which may include PICS in its sequelae. To understand the extent of disability and the survival journey in New Zealand, would be of benefit not only to patients and families making sense of their recovery, but to clinicians and health care workers wanting to understand how best to support these patients once they have left hospital. CLINICALTRIAL Ethics ID: 21/NTA/107. Australia and New Zealand Clinical trials registration (ANZCTR) no: 1262100133588

OS10.6.A Supportive care needs of TYA childhood brain tumour survivors and their caregivers: a mixed methods study

2021 ◽  
Vol 23 (Supplement_2) ◽  
pp. ii14-ii14
Author(s):  
E Nicklin ◽  
G Velikova ◽  
A Glaser ◽  
N Sarwar ◽  
M Kwok-Williams ◽  
...  
Keyword(s):  
Supportive Care ◽  
Brain Tumour ◽  
Qualitative Data ◽  
Unmet Needs ◽  
Supportive Care Needs ◽  
Structured Interviews ◽  
Care Needs ◽  
Long Term Follow Up

Abstract BACKGROUND Childhood brain tumour survivors and their family caregivers can experience many late effects of treatment including social, cognitive and physical issues. Yet, the supportive care needs of survivors, now teenagers and young adults (TYAs), and their caregivers population are largely unknown. We aimed to gain an in-depth understanding of this populations’ supportive care needs. MATERIAL AND METHODS This study used a convergent mixed methods design including quantitative (survey) and qualitative data (in-depth semi-structured interviews). Participants were recruited from long-term follow-up clinics (in three NHS Trusts in England) and online. Participants included childhood brain tumour survivors, at least five years from diagnosis, currently aged 13–30 and their primary caregivers. The results from quantitative and qualitative data were integrated using a Joint Display Table. RESULTS 136 eligible survivors and caregivers (78 survivors/58 caregivers) were approached to take part in the survey. In total, 112 participants (69 survivors/43 caregivers) completed the survey. A further 22 participants took part in face-to-face semi-structured interviews (11 survivors/11 caregivers). The integrated findings indicate that both survivors and caregivers have unmet needs many years after diagnosis. TYA survivors specifically had high unmet needs in relation to their psychological health, social lives (including romantic relationships), employment, and independence. Caregivers experienced even more unmet needs - including regarding their own psychological well-being and survivors’ financial issues. Survivors further from diagnosis, unemployed survivors and single caregivers were more likely to report unmet needs. Barriers preventing survivors and caregivers accessing supportive services were highlighted, including (but not exclusive to) families not being aware of support available, location of services, and accessibility to information/support. CONCLUSION This research provides leads to improving supportive care and long-term follow-up services. Understanding unmet needs and recognising what services are required is critical to improving survivor and caregiver quality of long-term survival.

scholarly journals Genetics-related service and information needs of childhood cancer survivors and parents: a mixed-methods study

2019 ◽  
Vol 28 (1) ◽  
pp. 6-16 ◽  
Author(s):  
Janine Vetsch ◽  
◽  
Claire E. Wakefield ◽  
Katherine M. Tucker ◽  
Maria McCarthy ◽  
...  
Keyword(s):  
Mixed Methods ◽  
Cancer Survivors ◽  
Childhood Cancer ◽  
Information Needs ◽  
Childhood Cancer Survivors ◽  
Mixed Methods Study ◽  
Related Service

scholarly journals VARIABILITY IN ACCESS TO VA’S AID AND ATTENDANCE PENSION BENEFIT: A MIXED-METHODS STUDY

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S744-S745
Author(s):  
Kali S Thomas ◽  
Emily Corneau ◽  
Stefanie Gidmark ◽  
Taylor Rickard ◽  
Susan Allen
Keyword(s):  
Mixed Methods ◽  
Low Income ◽  
Mixed Methods Study ◽  
Service Organizations ◽  
Pension Benefit ◽  
Care Needs ◽  
Eligibility Criteria ◽  
Term Care ◽  
Medical Centers

Abstract The Veterans Benefit Administration’s (VBA) Aid and Attendance enhanced pension benefit (A&A) is available to older, low-income Veterans who require assistance meeting their daily needs. However, reports indicate that A&A is underutilized with only 1/3 of eligible Veterans receiving this benefit. The objective of this mixed methods study is to characterize the variability in A&A enrollment across VA Medical Centers (VAMCs) and determine factors attributable to the variation. Using VA administrative data, we calculated the rate of enrollment in A&A among Veterans receiving pension. We then purposefully sampled 16 Chiefs of Social Work at VAMCs with the highest (n=7) and lowest (n=9) rates of enrollment. Interviews were transcribed, coded, and analyzed using conventional qualitative research methods. The rate of enrollment in A&A varies from <1% to 23% across VAMCs. VAMCs that had higher rates of enrollment were larger and more likely to be located in the South and Mid-Atlantic regions. Respondents at sites with low rates of enrollment indicate that education around the eligibility criteria is needed for VAMC staff. They also report that outreach to Veterans about this benefit is limited. Respondents at VAMCs with high rates of enrollment indicate that the relationships with VBA and Veterans Service Organizations facilitates access. Universally, respondents viewed the A&A benefit positively and note that it helps meet Veterans’ long-term care needs. As the Veteran population continues to age, it is important that VA ensure equal access to A&A for eligible Veterans. Implications of these findings and next steps will be discussed.

scholarly journals Prevalence and correlates of psychological distress, unmet supportive care needs, and fear of cancer recurrence among haematological cancer patients during the COVID-19 pandemic

2021 ◽  
Author(s):  
Nienke Zomerdijk ◽  
Michelle Jongenelis ◽  
Camille E Short ◽  
Andrew Smith ◽  
Jane Turner ◽  
...  
Keyword(s):  
Psychological Distress ◽  
Supportive Care ◽  
Perceived Risk ◽  
Unmet Needs ◽  
Cancer Recurrence ◽  
Supportive Care Needs ◽  
Fear Of Cancer Recurrence ◽  
Disruptive Effect ◽  
Care Needs ◽  
Fear Of Cancer

Abstract Background The COVID-19 pandemic has had a disruptive effect on people with haematological cancers, who represent a high-risk population due to the nature of their disease and immunosuppressive treatments. We aimed to identify the psychological impacts of the COVID-19 pandemic on haematology patients and identify correlated factors to inform the development of appropriate supportive interventions.Methods 394 respondents volunteered their participation in response to a study advertisement distributed online through established haematology groups. Participants completed a self-report online survey exploring well-being, psychological distress, unmet supportive care needs, and fear of cancer recurrence.Results At least 1 in 3 respondents (35%) reported clinical levels of distress and nearly 1 in 3 (32%) identified at least one unmet need. Among respondents in remission (n = 134), clinical fear of cancer recurrence was reported by nearly all (95%). Unmet needs, pre-existing health conditions, younger age, financial concerns, and perceived risk of contracting COVID-19 were the dominant factors contributing to psychological distress during the pandemic. Psychological distress, lost income, perceived inadequate support from care team, perceived risk of contracting COVID-19, and being a woman were significantly associated with unmet needs. Psychological distress and concern about the impact of COVID-19 on cancer management were significantly associated with fear of cancer recurrence among respondents in remission.Conclusion Results highlight the high psychological burden and unmet needs experienced by people with haematological cancers during the COVID-19 pandemic and indicate a need for innovative solutions to rapidly identify distress and unmet needs during, and beyond, pandemic times.

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