Patient and carer experiences of lung cancer referral pathway in a regional health service: a qualitative study

Otty, Zulfiquer; Brown, Amy; Larkins, Sarah; Evans, Rebecca; Sabesan, Sabe

doi:10.1111/imj.16022

Cited by 5 publications

(34 citation statements)

References 45 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…A total of nine studies were included in this review. Eight studies were conducted in Australia [ 30 – 33 , 35 – 38 ] and one in New Zealand [ 34 ]. The number of rural lung cancer participants included across studies ranged from n = 1 to n = 70.…”

Section: Resultsmentioning

confidence: 99%

“…All studies included rural, regional, or remote lung cancer populations, with four studies providing a comparison with non-rural populations [ 33 , 36 – 38 ]. The majority of studies ( n = 5) used solely qualitative designs [ 30 , 31 , 34 , 35 , 37 ] with four studies using mixed methods [ 32 , 33 , 36 , 38 ]. Qualitative data were collected using semi-structured interviews [ 30 – 33 , 35 , 36 , 38 ] with one study using focus groups [ 34 ] and another using interviews and focus groups [ 37 ].…”

Section: Resultsmentioning

confidence: 99%

“…The majority of studies ( n = 5) used solely qualitative designs [ 30 , 31 , 34 , 35 , 37 ] with four studies using mixed methods [ 32 , 33 , 36 , 38 ]. Qualitative data were collected using semi-structured interviews [ 30 – 33 , 35 , 36 , 38 ] with one study using focus groups [ 34 ] and another using interviews and focus groups [ 37 ]. Six studies defined rurality using a classification system [ 30 , 32 , 33 , 35 , 37 , 38 ] whilst three studies did not report using a geographical classification system but did report conducting research in a rural, regional, or remote area [ 31 , 34 , 36 ].…”

Section: Resultsmentioning

confidence: 99%

“…The need for health services and professionals to better understand the cultural needs of Māori patients and family was highlighted as well as strategies that meet these needs. Family members had to take the initiative at various points in the patient’s cancer care journey, acting as enablers for patients Otty et al [ 35 ] (2023) Australia Aim: To explore the experiences and perceptions of people with lung cancer and their carers Lung cancer patients n = 19 Lung cancer carers n = 7 Median age = 64 M/F = 10/9 Northern Australia Regional n = 12 Rural n = 4 Remote n = 3 Cross sectional descriptive qualitative study Qualitative data collected using semi-structured interviews Iterative inductive thematic analysis Rurality defined using MMA Factors that impacted care experience were good communication, timeliness, patient advocacy, and support. Improper communication, long waiting times, uncertainty about the process, and inconsistent advice negatively impacted care experience Page et al [ 36 ] (2016) Australia Aim: To survey the level of lung cancer awareness in rural and remote Aboriginal and Torres Straight Islander communities and discover perceived barriers to timely diagnosis and treatment of lung cancer Lung cancer patients n = 2 Community members n = 51 Health workers n = 14 Queensland, Australia Rural patient n = 1 Urban patient n = 1 Mixed method design Qualitative data collected using interviews Research conducted in outer regional and remote communities in addition to one urban setting An Indigenous person diagnosed with lung cancer faces unique cultural, physical, and psychological challenges.…”

Section: Resultsmentioning

confidence: 99%

See 3 more Smart Citations

A systematic review on the qualitative experiences of people living with lung cancer in rural areas

Ali,

Nelson,

McInnerney

et al. 2024

Support Care Cancer

View full text Add to dashboard Cite

Purpose To synthesize the qualitative literature exploring the experiences of people living with lung cancer in rural areas. Methods Searches were performed in MEDLINE, CINAHL, and PsycINFO. Articles were screened independently by two reviewers against pre-determined eligibility criteria. Data were synthesized using Thomas and Harden’s framework for the thematic synthesis of qualitative research. The CASP qualitative checklist was used for quality assessment and the review was reported in accordance with the ENTREQ and PRISMA checklists. Results Nine articles were included, from which five themes were identified: (1) diagnosis and treatment pathways, (2) travel and financial burden, (3) communication and information, (4) experiences of interacting with healthcare professionals, (5) symptoms and health-seeking behaviors. Lung cancer diagnosis was unexpected for some with several reporting treatment delays and long wait times regarding diagnosis and treatment. Accessing treatment was perceived as challenging and time-consuming due to distance and financial stress. Inadequate communication of information from healthcare professionals was a common concern expressed by rural people living with lung cancer who also conveyed dissatisfaction with their healthcare professionals. Some were reluctant to seek help due to geographical distance and sociocultural factors whilst others found it challenging to identify symptoms due to comorbidities. Conclusions This review provides a deeper understanding of the challenges faced by people with lung cancer in rural settings, through which future researchers can begin to develop tailored support to address the existing disparities that affect this population.

show abstract

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

See 2 more Smart Citations

A systematic review on the qualitative experiences of people living with lung cancer in rural areas

Ali,

Nelson,

McInnerney

et al. 2024

Support Care Cancer

View full text Add to dashboard Cite

show abstract

“…This qualitative study used semistructured interviews of patients with HNC and HCWs [49][50][51][52] and was deemed exempt by the institutional review boards (IRBs) of Mass General Brigham (IRB 2021P003395 and 2022P002284), Dana-Farber Cancer Institute (IRB 22-100), and Boston Medical Center (IRB H-43278 and H-43344). Written informed consent was obtained from patients, and verbal informed consent was obtained from HCWs caring for patients with HNC.…”

Section: Methodsmentioning

confidence: 99%

Perspectives on Referral Pathways for Timely Head and Neck Cancer Care

Batool,

Hansen,

Sethi

et al. 2024

JAMA Otolaryngol Head Neck Surg

View full text Add to dashboard Cite

ImportanceTimely diagnosis and treatment are of paramount importance for patients with head and neck cancer (HNC) because delays are associated with reduced survival rates and increased recurrence risk. Prompt referral to HNC specialists is crucial for the timeliness of care, yet the factors that affect the referral and triage pathway remain relatively unexplored. Therefore, to identify barriers and facilitators of timely care, it is important to understand the complex journey that patients undertake from the onset of HNC symptoms to referral for diagnosis and treatment.ObjectiveTo investigate the referral and triage process for patients with HNC and identify barriers to and facilitators of care from the perspectives of patients and health care workers.Design, Participants, and SettingThis was a qualitative study using semistructured interviews of patients with HNC and health care workers who care for them. Participants were recruited from June 2022 to July 2023 from HNC clinics at 2 tertiary care academic medical centers in Boston, Massachusetts. Data were analyzed from July 2022 to December 2023.Main Outcomes and MeasuresThemes identified from the perspectives of both patients and health care workers on factors that hinder or facilitate the HNC referral and triage process.ResultsIn total, 72 participants were interviewed including 42 patients with HNC (median [range] age, 60.5 [19.0-81.0] years; 27 [64%] females) and 30 health care workers (median [range] age, 38.5 [20.0-68.0] years; 23 [77%] females). Using thematic analysis, 4 major themes were identified: the HNC referral and triage pathway is fragmented; primary and dental care are critical for timely referrals; efficient interclinician coordination expedites care; and consistent patient−practitioner engagement alleviates patient fear.Conclusions and RelevanceThese findings describe the complex HNC referral and triage pathway, emphasizing the critical role of initial symptom recognition, primary and dental care, patient information flow, and interclinician and patient−practitioner communication, all of which facilitate prompt HNC referrals.

show abstract

Cancer carers’ constructions of caregiving during the COVID-19 pandemic: A study on Aotearoa- New Zealand

Vindamuri

View full text Add to dashboard Cite

Background. Cancer is an illness that not only affects people who are diagnosed but also informal cancer carers. The COVID-19 pandemic has been found to decrease carers’ access to formal supports, such as healthcare services, and informal supports, such as family and friends. In turn, decreased supports due to COVID-19 regulations has also been associated with an increased engagement in care provision tasks by carers, such as hygiene management and at home cancer treatments, side effect management and recovery. This increase in care tasks has also been related to carer’s increased psychological distress and caregiver burden as well as decreased quality of life. The current body of research on cancer caring during COVID-19 is predominantly quantitative based, with limited qualitative studies. Furthermore, there is no research in Aotearoa-New Zealand that explores how carers make meaning of their experiences as cancer carers post-COVID-19.Aims. This study aimed to explore how cancer carers in Aotearoa-New Zealand constructed their caregiving amidst COVID-19. It also aimed to explore how carers negotiated supports for themselves and how these changed across the COVID-19 pandemic.Methods. This qualitative study adopted a social constructionist epistemology and used positioning theory as the theoretical standpoint. For cancer carers to be eligible for this study: carers and person with cancer must be above 18 years of age, self-identify as a cancer carer, and the cancer diagnosis or treatment must have begun or occurred after March 2020. Semi-structured interviews were conducted with eight participants who were recruited through community cancer organisations and social media. The data was analysed using thematic analysis.Results. Four carer subject positions across the cancer narratives were identified: The Advocate, The Intimate Carer, The Social carer, and The Focused Carer. The advocate found that carers were actively involved in interactions with healthcare professionals and often had to push for their person with cancer to receive adequate support. This was attributed by carers to the healthcare system being stretched thin due to COVID-19 related demands. The Intimate Carer identity was constructed around carers positioning themselves as being the main source of physical and emotional support in private settings such as homes and social settings. This identity was intensified due to COVID-19 isolating carers from accessing support from healthcare professionals, family members and friends. This included taking on supporting the person with cancer’s re-integration into society, increasing hygiene maintenance at home and monitoring medical management. In The Social Carer, there were two constructions. The dominant construction revolved around carers feeling invisible in their social interactions. The second construction revolved around the positive impact of a few social interactions that acknowledged the carer. The Focused Carer revolved around the impact of the caring experience being constructed around the person with 2 cancer. It also explored the carers construction of the relationship with the carer being stronger and the influence this relationship had the construction of the carer’s self-identity.Conclusion. Throughout the course of the cancer journey amidst the COVID-19 pandemic, cancer carers took on multiple identities, which were fluid within their accounts, with different identities being taken on at different stages of the cancer caring journey. The findings from this study have implications for healthcare professionals and community care organisations as it highlights the way in which cancer caring has been affected by COVID-19.

show abstract

Patient and carer experiences of lung cancer referral pathway in a regional health service: a qualitative study

Cited by 5 publications

References 45 publications

A systematic review on the qualitative experiences of people living with lung cancer in rural areas

A systematic review on the qualitative experiences of people living with lung cancer in rural areas

Perspectives on Referral Pathways for Timely Head and Neck Cancer Care

Cancer carers’ constructions of caregiving during the COVID-19 pandemic: A study on Aotearoa- New Zealand

Contact Info

Product

Resources

About