'It's a traumatic illness, traumatic to witness': a qualitative study of the experiences of bereaved family caregivers of patients with cutaneous T-cell lymphoma.

BACKGROUND: Cutaneous T-cell lymphomas (CTCL) are rare cancers, which can be difficult to diagnose, are incurable and adversely affect quality of life, particularly in advanced disease. Families often provide care, but little is known about their experiences or needs while caring for their relative with advanced disease or in bereavement. OBJECTIVES: To explore the experiences of bereaved family caregivers of patients with CTCL. METHODS: Single, semi-structured qualitative interviews were conducted with bereaved family caregivers of patients with CTCL recruited via a supra-regional CTCL clinic. Transcribed interviews were analysed thematically, focusing on advanced disease, the approach of death and bereavement. RESULTS: Fifteen carers of 11 deceased patients participated. Experiences clustered under four themes: (1) complexity of care and medical intervention; (2) caregiver roles in advanced CTCL; (3) person-centred vs. organization-centred care in advanced CTCL and (4) knowing and not knowing: reflections on dying, death and bereavement. Caregivers often had vivid recollections of the challenges of caring for their relative with advanced CTCL and some took on quasi-professional roles as a result. Advanced disease made high demands on both organizational flexibility and family resources. For many caregivers, seeing disease progression was a prolonged and profoundly traumatic experience. The extent to which they were prepared for their relative's death and supported in bereavement was highly variable. Sub-themes within each theme provide more detail about caregiver experiences. CONCLUSIONS: Family caregivers should be considered part of the wider healthcare team, acknowledging their multiple roles and the challenges they encounter in looking after their relative with CTCL as the disease progresses. Their experiences highlight the importance of organizational flexibility and of good communication between healthcare providers in advanced CTCL.

Enhanced skills in periodontology: evaluation of a pilot scheme for general dental practitioners and dental care professionals in London.

Background The need for periodontal management is great and increasing; thus, the oral and dental workforce should be suitably equipped to deliver contemporary care. Health Education London developed a training scheme to extend the skills of dentists and dental care professionals (DCPs).Aim To examine the feasibility of assessing a skill-mix initiative established to enhance skills in clinical periodontology involving the views of patients, clinicians and key stakeholders, together with clinical and patient outcomes in London.Methods This mixed methods feasibility and pilot study involved four parallel elements: a postal questionnaire survey of patients; analysis of clinical logbooks; self-completion questionnaire survey of clinicians; and semi-structured interviews of key stakeholders, including clinicians.Results Twelve of the 19 clinicians participated in the evaluation, returning completed questionnaires (63%) and providing access to log diaries and patients. Periodontal data from 42 log-diary cases (1,103 teeth) revealed significant improvement in clinical outcomes (P = 0.001 for all). Eighty-four percent (N = 99) of the 142 patients returning a questionnaire reported improved dental health; however, responses from hospital patients greatly exceeded those from dental practice. Interviews (N = 22) provided evidence that the programme contributed to professional healthcare across four key domains: 'service', 'quality care', 'professional' and 'educational'. Clinicians, while supportive of the concept, raised concerns regarding the mismatch of their expectations and its educational and service outcomes.Discussion The findings suggest that it is feasible to deliver and evaluate inter-professional extended skills training for dentists and dental care professionals, and this may be evaluated using mixed methods to examine outcomes including clinical log diaries, patient questionnaires and stakeholder interviews. This inter-professional course represents a positive development for patient care using the expertise of different members of the dental team; however, its formal integration to the health and educational sectors require further consideration.

'We had to change to single beds because I itch in the night': a qualitative study of the experiences, attitudes and approaches to coping of patients with cutaneous T-cell lymphoma.

BACKGROUND: Primary cutaneous T-cell lymphoma (CTCL) is a rare but prevalent condition which can have a significant impact on many aspects of quality of life. However, there is little evidence of patients' lived experience of CTCL. OBJECTIVES: To understand in greater depth patients' experiences of living and coping with CTCL, and to inform the development of models of care for this population in line with U.K. METHODS: Semi-structured interviews were conducted with a purposive sample of patients with CTCL who attended an inner-city teaching hospital. Participants were purposively selected according to their disease stage, age, sex and ethnicity. RESULTS: Nineteen patients with CTCL (stages IB-IVB), aged between 41 and 83 years, participated in a single interview. This included 10 men; 15 people identified themselves as white British. Interviews lasted a median of 55 (range 28-170) min. Two main themes emerged: issues regarding diagnosis, particularly a perceived delay in diagnosis, and the impact of CTCL (subthemes related to physical well-being, practical concerns and psychological and social well-being and coping). CONCLUSIONS: Findings from this study illuminate the diverse effects of CTCL on patients' lives. The universal experience of delays in diagnosis was striking and a concern to patients. The disease, particularly its physical symptoms, had a significant impact on patients' lives, including employment, leisure and relationships. Despite the symptom burden and its impact, participants described effective coping strategies such as drawing on social support, maintaining normal lives and becoming well informed about CTCL. Proactive holistic assessment and management of the range of patient concerns is needed in providing care for patients with CTCL and their family and friends.

'We're all carrying a burden that we're not sharing': a qualitative study of the impact of cutaneous T-cell lymphoma on the family.

BACKGROUND: Cutaneous T-cell lymphoma (CTCL) is a rare, progressive cancer that can be life limiting and highly disfiguring. Patients with CTCL experience poor quality of life; however, there is little published about the experiences of their families. OBJECTIVES: To describe the impact of CTCL on family members and how they cope and adjust, to inform support services. METHODS: Semistructured qualitative interviews were conducted with adult informal caregivers of patients with CTCL recruited via a supraregional CTCL clinic. Interviews explored the history of each patient's illness, the impact of CTCL on the patient and the family, and views about family support. Data were analysed thematically using the Family Adjustment and Adaptation Response model as an interpretative framework. RESULTS: Fourteen caregivers were interviewed (11 spouses, one friend, two daughters; 10 women, four men; all white British; aged 39-85 years). Three key themes emerged: (i) demands of CTCL (the disease, caregiving, financial impact, physical and emotional intimacy); (ii) family capabilities (family support, information, healthcare provider support, other coping strategies); and (iii) adjustment and adaptation (acceptance, changes in patient-caregiver relationship and family dynamics). CTCL was central in many aspects of caregivers' lives, particularly relationships, communication and intimacy. CONCLUSIONS: Our findings demonstrate the multiple demands that CTCL places on caregivers, the capabilities and resources they draw upon to cope, and the significant impact of CTCL on the family. To support families and patients, easily accessible services are needed that include the family in the unit of care, provide support and information, and understand the process of family adjustment and adaptation.

What are the supportive and palliative care needs of patients with cutaneous T-cell lymphoma and their caregivers? A systematic review of the evidence.

BACKGROUND: Primary cutaneous T-cell lymphoma (CTCL) is progressive, can cause significant symptoms, and impacts on quality of life. Therefore supportive and palliative care might have a role in the care of patients and families. OBJECTIVES: To identify and appraise the available peer-reviewed evidence on the supportive and palliative care needs of patients and their caregivers. METHODS: A systematic review of the literature was conducted. Extracted data from eligible papers were collated in themes relating to supportive and palliative care needs and outcomes for patients, informal caregivers, health professionals and reported service models. RESULTS: Eighteen retained papers reported a symptom or quality-of-life measure. Five reported only these measures, 13 reported outcomes in relation to an intervention. Systemic therapy targeted at disease remission was the most commonly reported intervention (12/13). No quality-of-life tool was consistently used. Pruritus was frequently reported as an outcome (n = 9) often using the visual analogue scale, VAS itch. Psychosocial, spiritual and caregiver needs were reported infrequently or not at all. CONCLUSIONS: No measure is routinely used to measure supportive and palliative care outcomes in CTCL. Physical needs, particularly pruritus, were reported commonly; however, qualitative evidence of experience is limited. Caregivers' needs are rarely explored. To compare outcomes from clinical studies, a single multidimensional tool used in routine practice would be useful. Further work is needed to explore a model of service that meets the specific physical, psychosocial and spiritual needs of this group of patients and their carers.

Reproduction and feeding behavior of Myzus persicae on four cereals.

Green peach aphid, Myzus persicae (Sulzer), does not overwinter outdoors in Minnesota; it arrives each spring on low-level jet streams from the south. After arrival, anholocylic reproduction occurs on numerous herbaceous species, including many common weeds, before movement to potato, Solanum tuberosum L. In investigating aphid feeding behavior on barrier crops, we observed winter wheat, Triticum aestivum L., colonized by green peach aphid. The Northern Great Plains grows 94,000 ha of potatoes and 20.5 million ha of small grain cereals each year, the latter potentially providing an early emerging and widely distributed green peach aphid host to influence early season potato colonization. Life tables statistics indicated green peach aphid had its highest reproductive potential among cereals on winter wheat, with rye (Secale cereale L.) > barley (Hordeum vulgare L.) > oats (Avena sativa L.). Green peach aphid was found to colonize barley, rye, and winter wheat, but not oats. Mean generation time, net reproductive rate, doubling time, and finite rate of increase were significantly different between host plants. Electrical penetration graph technique indicated mean nonpenetration duration by green peach aphid was significantly different among plant species, and significantly longer on winter wheat than on the other cereals. Mean xylem phase duration was not significantly different among plant species but sieve element salivation was of longest duration on potato. Phloem sap ingestion (E2) was also significantly different among plant species with longest E2 duration on winter wheat. This study demonstrates that this aphid can effectively use key cereals at the vegetative stage.

The Importance of an Invasive Aphid Species in Vectoring a Persistently Transmitted Potato Virus: Aphis glycines Is a Vector of Potato leafroll virus.

Experiments were undertaken to determine soybean aphid (i) landing rates in potato fields, (ii) population dynamics on potato, (iii) feeding behavior compared with green peach aphid on potato using the electrical penetration graph technique (EPG), (iv) acquisition, retention, and transmission of Potato leafroll virus (PLRV), and (v) if soybean aphid-infested crop borders could increase PLRV spread in seed potato. Soybean aphid (Aphis glycines) landed on potato but failed to establish colonies. EPG showed no significant differences between the aphid species in preprobe, xylem phase, sieve element salivation, and phloem sap ingestion durations on potato. Soybean aphid acquired PLRV 78% of the time, and 75 and 70% of individual aphids retained infectivity after 72 and 144 h, respectively. Soybean aphid transmitted PLRV to susceptible potato with 6 to 9% efficiency. Prior to the invasion of this exotic pest, soybean borders were commonly used in Minnesota and North Dakota to protect seed potato against spread of Potato virus Y. In 2002 and 2004, PLRV incidence was not different in potatoes with soybean borders whether treated with insecticide or not. In 2005, with extreme soybean aphid pressure, potatoes with untreated (no insecticide) borders had significantly greater PLRV spread. This is the first report of soybean aphid transmitting PLRV.

Factors affecting outcome of depressive symptoms in alcoholics.

Eighty-eight patients consecutively admitted to an alcohol treatment program were studied to determine the amount of depressive symptoms on entry to the program and after 4 weeks of treatment. The degree of symptoms was in turn related to various aspects of their drinking behavior. Twenty-two of the patients were classified as having moderate to marked depressive symptoms, 40 had mild symptoms, and 26 had no significant symptoms at the time of entry into the program. Factors in drinking behavior that best characterized those with moderate to marked symptoms were addiction, sleep disturbance, hangover incapacitation, loss of control, neurological signs, and organicity/toxicity. At the end of treatment, only four patients could actually be diagnosed as depressed, while 12 had mild residual symptoms and 72 no longer had significant symptoms. The one factor that clearly distinguished those patients with residual depressive symptoms was the use of drinking for social facilitation. For such individuals, bars and drinking were the focus of social life. The favorable course of depressive symptoms in alcoholics soon after they stop drinking suggests that they are more likely the consequence of drinking than the cause of it. The fact that patients who drink primarily to facilitate social aspects of their lives were the most likely to have residual symptoms suggests that treatment of such individuals should involve development of alternative mechanisms of social interaction.