Gatekeepers in research: the experience of recruiting carers of people with chronic blood cancers.

BACKGROUND: Gatekeepers play a crucial role in successfully recruiting participants to nurse-led qualitative research, particularly in clinical settings. AIM: To present the authors' experience of recruiting and conducting qualitative interviews during the COVID-19 pandemic with the carers of patients who have chronic haematological malignancies, and the effects that gatekeepers had on recruitment. DISCUSSION: The authors had to adapt and adjust their research plan because of difficulties in accessing their target population. Establishing and maintaining relationships with gatekeepers and a Patient and Public Involvement (PPI) panel was integral in successfully collecting data. CONCLUSION: Ongoing reflexivity and feedback from supervisors, gatekeepers and PPI members in addition to developing research experience can help researchers to overcome challenges in recruiting difficult-to-access populations. IMPLICATIONS FOR PRACTICE: Researchers need to be prepared for challenges to their research plans and carefully consider the options available for addressing these challenges. Reaching out to others is integral in expanding researchers' ideas.

The hidden psychosocial impact of caregiving with chronic haematological cancers: A qualitative study.

PURPOSE: People living with a chronic haematological malignancy (CHM) are living longer due to the continued emergence of novel treatments. Their care is mostly delivered in an outpatient setting, and little is known about their experience of this disease trajectory. The aim of this qualitative study was to explore carers' experiences, expressed needs and psychosocial vulnerability. METHOD: In-depth interviews with a purposive sample of carers (n=11) explored their experiences of caring for someone with a CHM and the impact it had on their lives. Reflexive thematic analysis guided data analysis. RESULTS: Two main themes were developed from the interview data: 1) restructured living, and 2) sustaining caring, with six subthemes: shrinking world, constant carer, healthcare professional support, needing information, particularly in the early days, peer support, and taking control. CONCLUSIONS: Caregivers of patients with a CHM undergo a significant life change which is often invisible to others. Identifying carers at risk of psychosocial vulnerability and recognising the caregiver as a member of the care team are significant steps towards addressing the support needs of this population.

Providing Care to People Living with a Chronic Hematological Malignancy: A Qualitative Evidence Synthesis of Informal Carers' Experiences.

OBJECTIVE: Chronic hematological malignancies such as multiple myeloma, chronic lymphocytic leukemia (CLL), indolent B-cell lymphomas, and myelodysplastic syndromes (MDS) have seen significant advances in treatment. Treatment developments have resulted in patients living for many years, often between periods of being acutely unwell, relapses, and remission. Informal carers play a major role in supporting patients through the uncertain and long illness trajectory. This qualitative evidence synthesis (QES) aims to synthesize qualitative research evidence on the experiences of informal carers caring for a patient with a chronic hematological malignancy (CHM). DATA SOURCES: This qualitative evidence synthesis followed the Enhancing transparency in reporting the synthesis of qualitative research (ENTREQ) guidelines and adopted a "best fit" framework synthesis approach using a "redefining normal" conceptual framework. A systematic search of seven databases was undertaken. CONCLUSION: Sixteen qualitative studies were synthesized in this review. Eight review findings illuminated carers' unmet information needs, challenges with caring responsibilities, end-of-life care, and changes in the dyad carer-patient relationship. IMPLICATIONS FOR NURSING PRACTICE: This best-fit framework synthesis illuminates the wide-ranging challenges experienced by informal caregivers of people living with a chronic hematological malignancy. Carers' fear for the future highlights the need for interventions to support them with their fears. Carers' priority on their loved one's quality of life is impaired by late end-of-life discussions often not occurring until a sudden deterioration in the patient's condition. Early supportive relationships between carers and health care providers can promote conversations on poor prognosis and end-of-life care. Future research should focus on qualitative longitudinal studies with caregiver-patient dyads.

Psychosocial vulnerability among carers of persons living with a chronic illness: A scoping review.

AIMS: To outline and examine evidence related to the meaning of 'psychosocial vulnerability' among caregivers of persons with chronic illnesses. BACKGROUND: The number of informal caregivers continues to rise globally. Their risk of psychosocial vulnerability is frequently overlooked, but understanding their psychosocial vulnerability may offer insights into meeting their needs. DESIGN: Scoping review following the PRISMA 2020 extension guidelines. DATA SOURCES: The databases CINAHL, Embase, Medline/Pubmed, Cochrane Library, PsycINFO, Web of Science, Google Scholar, Lenus and ProQuest were systematically searched to identify original research. No date limit was set, and 23 studies were included. REVIEW METHODS: A five-step approach using the Arksey and O'Malley framework. Thematic analysis guided data analysis. RESULTS: Carers' psychosocial vulnerability occurs when they experience barriers to resources while access and use of supports reduce risk. Antecedents of psychosocial vulnerability include a carer's age and sex, socioeconomic status and their health and wellbeing. Psychosocial vulnerability affects carers' relationships and causes personal losses. CONCLUSIONS: The concept of carers' psychosocial vulnerability is complex. Recognition of carers at risk for psychosocial vulnerability would help nurses direct relevant support and information to carers who need it most.

Living with relapsed myeloma: Symptoms and self-care strategies.

AIMS AND OBJECTIVES: To explore which symptoms relapsed myeloma patients experience and what self-care strategies are used. METHODS: This was a qualitative study utilising focus group interviews (n = 4) with relapsed myeloma patients (n = 15) and carers (n = 9). The focus groups were analysed and guided by thematic analysis. RESULTS: Three major themes with subthemes were identified following analysis of the interview data: "difficult symptoms; "self-care" and "feeling vulnerable." These findings indicate the challenges relapsed myeloma patients experience with ongoing symptoms and highlight the importance of continuity of care. CONCLUSIONS: Symptom management for myeloma patients remains complex due to the array of treatments given. These patients require holistic care and thorough regular assessments to help them cope with the adverse effects on their physical and psychological health. For patients with a long-term diagnosis of myeloma, self-management workshops and regular education sessions may be of benefit. RELEVANCE TO CLINICAL PRACTICE: This study highlights the key role of healthcare professionals in going beyond assessment of symptoms to offering advice and support to assist relapsed myeloma patients in managing their symptoms.

Managing relapsed myeloma: The views of patients, nurses and doctors.

PURPOSE: The study aim was to explore whether there were differing opinions on the current management of relapsed myeloma between patients and health care professionals, a topic which has never been explored previously in the literature. METHODS: This qualitative study was undertaken at a regional specialist haematology centre in Ireland. Individual interviews were undertaken with multiple myeloma patients with relapsed disease (n = 8). Three focus groups were also undertaken with haematology nurse specialists, haematology doctors and staff nurses working in a haematology day unit (n = 17). The analysis of interview data was guided by thematic analysis. RESULTS: Two central themes were interpreted from the interview data: 'shared decision making with the expert patient' and 'an unpredictable disease journey'. Patients felt well informed regarding their illness but faced difficult decisions at times. Nurses and doctors stressed the importance of the early introduction of palliative care but acknowledged difficulties due to myeloma being unpredictable. CONCLUSION: Managing relapsed myeloma was fraught with complex issues. Patients developed alternative ways of coping with their disease including adopting the role of the 'expert patient', continuing to battle their disease and living with a chronic illness. Health care professionals struggle to manage the realities of a disease where the prognosis is improving. Uncertainty around patients' care and difficulties such as when 'enough is enough', continue to cause challenges. The transition to a chronic disease offers hope to patients and an opportunity for health care professionals to implement holistic care plans encouraging patients to be self proactive.