A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Facilitating needs based cancer care for people with a chronic disease : evaluation of an intervention using a multi-centre interrupted time series design

Background: Palliative care should be provided according to the individual needs of the patient, caregiver and family, so that the type and level of care provided, as well as the setting in which it is delivered, are dependent on the complexity and severity of individual needs, rather than prognosis or diagnosis. This paper presents a study designed to assess the feasibility and efficacy of an intervention to assist in the allocation of palliative care resources according to need, within the context of a population of people with advanced cancer. ---------- Methods/design: People with advanced cancer and their caregivers completed bi-monthly telephone interviews over a period of up to 18 months to assess unmet needs, anxiety and depression, quality of life, satisfaction with care and service utilisation. The intervention, introduced after at least two baseline phone interviews, involved a) training medical, nursing and allied health professionals at each recruitment site on the use of the Palliative Care Needs Assessment Guidelines and the Needs Assessment Tool: Progressive Disease - Cancer (NAT: PD-C); b) health professionals completing the NAT: PD-C with participating patients approximately monthly for the rest of the study period. Changes in outcomes will be compared pre-and post-intervention.---------- Discussion: The study will determine whether the routine, systematic and regular use of the Guidelines and NAT: PD-C in a range of clinical settings is a feasible and effective strategy for facilitating the timely provision of needs based care.

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

Constructions of children's needs in informal kinship care in rural China

Kinship care is the oldest form of alternative child care in the world. Recent years have witnessed a significant increase in the number of children being placed in kinship care across Western countries. However, in contrast to rapid knowledge advances about formal kinship care, far less is known about the needs of children in informal kinship care, especially in Asian contexts. This thesis and the study upon which it is formed sought to redress this knowledge gap. Qualitative approach was adopted to explore social constructions of children in informal kinship care in rural China. Parents in China seeking work in cities have left behind around 58 million rural children, mostly with relatives and without the involvement of the state. The present study examined caregivers’ and school personnel’s understandings of these school-age children’s needs through semi-structured interviews with 23 kin caregivers and five school personnel in Shijiapu Town, Jilin Province, China. The central question that guided the whole study is: What are the needs of children in informal kinship care in rural Jilin Province, China? Interpretative Phenomenological Analysis was used to categorise and interpret the qualitative data. Based on participants’ constructions, this study developed a need model with eight themes. They are: (1) emotional needs and mental health, (2) relationships, (3) empowerment and agency, (4) safety, (5) education, (6) basic care, (7) physical health, and (8) personal development. These needs are grounded in the Chinese context, and therefore a good understanding of Chinese culture is essential to address them. The first four needs particularly capture children’s separations from their parents, and the rest are more general, and can be applied to most Chinese children. To meet the most important need for children left behind, namely education, these caregivers determined that others needs sometimes have to be compromised. Children left behind are a vulnerable group in contemporary rural China, and their diverse needs are attended to by several groups. This study found that as children’s closest kin while their parents are away, caregivers play a vital role in salving the children’s emotional loss. Caregivers’ love and familial obligations strongly motivate them to care for these children, and sensitivity to social stigma makes them strive to show their love and care to compensate for perceived differences between these children and their peers. Caregivers’ efforts to make children happy, however, were sometimes criticised by some school personnel, who see this as spoiling. The conflicting viewpoint between caregivers and school personnel indicate their different roles and perceptions in children’s lives, and the latter influence these children in a more authoritative way. Informal kinship care has several advantages of addressing children’s needs, especially their needs for emotional bonds with family. Community-based kin networks provide children with both emotional and material support. However, these advantages sometimes are restricted by caregivers’ child rearing capacity. Having developed a model of the needs of children left behind in China, this study suggests that caregivers, school personnel and government social services work in harmony to be child-centred and meet these children’s diverse needs. The unmet needs of children left behind mainly result from unbalanced development between urban and rural China, therefore, it is imperative to enhance state policies and programs that improve wellbeing for this growing part of China’s people.

Prevalence, predictors, and correlates of supportive care needs among women 3–5 years after a diagnosis of endometrial cancer

Purpose The purpose of this study is to examine the prevalence, sociodemographic and clinical predictors, and physical and psychosocial correlates of unmet needs among women 3–5 years following treatment for endometrial cancer. Methods Women with endometrial cancer completed a survey around the time of diagnosis and again 3–5 years later. The follow-up survey asked women about their physical and psychosocial functioning and supportive care needs (CaSUN). Multivariable-adjusted logistic regression identified the predictors and correlates of women’s unmet needs 3–5 years after diagnosis. Results Of the 629 women who completed the cancer survivors’ unmet needs measure (CaSUN), 24 % (n = 153) women reported one or more unmet supportive care needs in the last month. Unmet needs at 3–5 years post-diagnosis were predicted by younger age (OR = 4.47; 95 % CI: 2.09–9.56) and advanced disease stage at diagnosis (OR = 2.47; 95 % CI: 1.38–4.45) and correlated with greater cancer symptoms (OR = 1.78; 95 % CI: 1.05–3.02), lower limb swelling (OR = 2.50; 95 % CI: 1.51–4.15), symptoms of anxiety (OR = 2.21; 95 % CI: 1.31–3.72), and less availability of social support (OR = 3.42; 95 % CI: 1.92–6.11). Women with a history of comorbidities (OR = 0.47; 95 % CI: 0.27–0.82) and those living in a rural area at the time of diagnosis (OR = 0.56; 95 % CI: 0.34–0.92) were less likely to report unmet needs. Conclusions Sociodemographic, health, and psychosocial factors seem important for identifying women who will or will not have unmet needs several years following endometrial cancer. Longitudinal assessments of people’s needs over the course of their cancer trajectory may be an effective way to identify areas that should receive further attention by health providers.

Incidence, risk factors and estimates of a woman's risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer

Objectives: Few studies have assessed the risk and impact of lymphedema among women treated for endometrial cancer. We aimed to quantify cumulative incidence of, and risk factors for developing lymphedema following treatment for endometrial cancer and estimate absolute risk for individuals. Further, we report unmet needs for help with lymphedema-specific issues. Methods: Women treated for endometrial cancer (n = 1243) were followed-up 3–5 years after diagnosis; a subset of 643 completed a follow-up survey that asked about lymphedema and lymphedema-related support needs. We identified a diagnosis of secondary lymphedema from medical records or self-report. Multivariable logistic regression was used to evaluate risk factors and estimates. Results: Overall, 13% of women developed lymphedema. Risk varied markedly with the number of lymph nodes removed and, to a lesser extent, receipt of adjuvant radiation or chemotherapy treatment, and use of nonsteroidal anti-inflammatory drugs (pre-diagnosis). The absolute risk of developing lymphedema was > 50% for women with 15 + nodes removed and 2–3 additional risk factors, 30–41% for those with 15 + nodes removed plus 0–1 risk factors or 6–14 nodes removed plus 3 risk factors, but ≤ 8% for women with no nodes removed or 1–5 nodes but no additional risk factors. Over half (55%) of those who developed lymphedema reported unmet need(s), particularly with lymphedema-related costs and pain. Conclusion: Lymphedema is common; experienced by one in eight women following endometrial cancer. Women who have undergone lymphadenectomy have very high risks of lymphedema and should be informed how to self-monitor for symptoms. Affected women need greater levels of support.

Choosing a model of maternity care: decision support needs of Australian women

- BACKGROUND Access to information on the features and outcomes associated with the various models of maternity care available in Australia is vital for women's informed decision-making. This study sought to identify women's preferences for information access and decision-making involvement, as well as their priority information needs, for model of care decision-making. - METHODS A convenience sample of adult women of childbearing age in Queensland, Australia were recruited to complete an online survey assessing their model of care decision support needs. Knowledge on models of care and socio-demographic characteristics were also assessed. - RESULTS Altogether, 641 women provided usable survey data. Of these women, 26.7 percent had heard of all available models of care before starting the survey. Most women wanted access to information on models of care (90.4%) and an active role in decision-making (99.0%). Nine priority information needs were identified: cost, access to choice of mode of birth and care provider, after hours provider contact, continuity of carer in labor/birth, mobility during labor, discussion of the pros/cons of medical procedures, rates of skin-to-skin contact after birth, and availability at a preferred birth location. This information encompassed the priority needs of women across age, birth history, and insurance status subgroups. - CONCLUSIONS This study demonstrates Australian women's unmet needs for information that supports them to effectively compare available options for model of maternity care. Findings provide clear direction on what information should be prioritized and ideal channels for information access to support quality decision-making in practice.

More equal than others?: Meeting the professional development needs of rural primary and secondary science teachers

It is often assumed that teachers in rural and remote schools are at a disadvantage when it comes to accessing professional development. But is there sufficient evidence to support this assumption? This paper reports findings from two national surveys comparing the professional development priorities of primary and secondary science teachers from metropolitan, provincial and remote schools. The research found that while teachers' unmet needs for some PD opportunities increased significantly with school remoteness, this was not the case for all opportunities. In teasing out the different PD priorities of primary and secondary science teachers, the paper provides evidence to help education authorities and professional organisations address the specific needs of teachers in different locations.

Mental health issues and resources in rural and regional communities : an exploration of perceptions of service providers

Objective: To identify service providers’ and community organisations’ perceptions of the resources available to support people with mental illness and the unmet needs of this client group in rural Queensland. Design: An exploratory study was undertaken involving focus group interviews across the study sites. Setting: Five regional towns in rural Queensland. Participants: Ten to 14 members were recruited for each of the five focus groups. The groups represented a diverse mix of participants including health and community service providers and representatives from community organisations. Results: Participants identified gaps in services in relation to health, employment and education, housing and accommodation, transport and social inclusion and health promotion. Inter-service communication and inappropriate funding models were themes affecting service delivery. Conclusions: Specific service issues of housing and transport were identified to be particularly problematic for people with mental illness across all towns. Intersectoral communication and funding models require further research.

Women's perceptions of their healthcare experience when they choose not to breastfeed

Research Question How do women who choose not to breastfeed perceive their healthcare experience? Method This qualitative research study used a phenomenographic approach to explore the healthcare experience of women who do not breastfeed. Seven women were interviewed about their healthcare experience relating to their choice of feeding, approximately four weeks after giving birth. Six conceptions were identified and an outcome space was developed to demonstrate the relationships and meaning of the conceptions in a visual format. Findings There were five unmet needs identified by the participants during this study. These needs included equity, self sufficiency, support, education and the need not to feel pressured. Conclusion Women in this study who chose not to breastfeed identified important areas where they felt that their needs were not met. In keeping with the Code of Ethics for Nurses and Midwives, the identified needs of women who do not breastfeed must be addressed in a caring, compassionate and just manner. The care and education of women who formula feed should be of the highest standard possible, even if the choice not to breastfeed is not the preferred choice of healthcare professionals.

It’s okay to ask : development and pilot testing of a question prompt list for patients with brain tumours

Background: Previous research identified that primary brain tumour patients have significant psychological morbidity and unmet needs, particularly the need for more information and support. However, the utility of strategies to improve information provision in this setting is unknown. This study involved the development and piloting of a brain tumour specific question prompt list (QPL). A QPL is a list of questions patients may find useful to ask their health professionals, and is designed to facilitate communication and information exchange. Methods: Thematic analysis of QPLs developed for other chronic diseases and brain tumour specific patient resources informed a draft QPL. Subsequent refinement of the QPL involved an iterative process of interviews and review with 12 recently diagnosed patients and six caregivers. Final revisions were made following readability analyses and review by health professionals. Piloting of the QPL is underway using a non-randomised control group trial with patients undergoing treatment for a primary brain tumour in Brisbane, Queensland. Following baseline interviews, consenting participants are provided with the QPL or standard information materials. Follow-up interviews four to 6 weeks later allow assessment of the acceptability of the QPL, how it is used by patients, impact on information needs, and feasibility of recruitment, implementation and outcome assessment. Results: The final QPL was determined to be readable at the sixth grade level. It contains seven sections: diagnosis, prognosis, symptoms and changes, the health professional team, support, treatment and management, and post-treatment concerns. At this time, fourteen participants have been recruited for the pilot, and data collection completed for eleven. Data collection and preliminary analysis are expected to be completed by and presented at the conference. Conclusions: If acceptable to participants, the QPL may encourage patients, doctors and nurses to communicate more effectively, reducing unmet information needs and ultimately improving psychological wellbeing.

Dispensing doctor : an underutilise resource?

Introduction Multidisciplinary models of organising and providing care have been proposed to decrease the health services gap between urban and rural populations but health workforce shortages exist across most professions and are further exacerbated by maldistribution. Flexibility and expansion of the range of tasks that a health professional can undertake were proposed. Dispensing doctors (DDs) are such an example. As part of DDs’ routine medical practice, DDs are able to both prescribe and dispense medicines to their patients. The granting of a dispensing licence to a doctor is intended to improve rural community access to medicines where there is no pharmacy within a reasonable distance. Method An iterative, qualitative descriptive methodology was used to identify factors which influenced DDs’ practice. Qualitative data were collected by in-depth face-to-face and telephone interviews with DDs. A combination of processes: qualitative content analysis and constant comparison were used to analyse the interview transcripts thematically. Member checking and separate coding were utilised to ensure rigour. Result Thirty-one interviews were conducted. The respondents universally acknowledged that the main reason for dispensing were for the convenience and benefits of their patients and to ensure continuity of care. DDs’ communities were generally more isolated and smaller when compared to their non-dispensing counterparts. DD-respondents viewed their dispensary as a service to the community. Peer pressure on prescribing was a key factors in self-regulating prescribing and dispensing. Conclusion DDs fulfill an important area of unmet needs by providing continuity of pharmaceutical care but the practice is hindered by significant barriers

Queensland psychiatrists' attitudes and perceptions of adults with intellectual disability

Background: Quality mental health care for adults with an intellectual disability (ID) depends upon the availability of appropriately trained and experienced psychiatrists. There have been few surveys of psychiatrists working with this population. Methods: This Australian study obtained psychiatrists' attitudes to and perceptions of the mental health needs of adults with an ID. Training needs were also sought. The survey instrument used was a purposely designed, 28-item self-administered questionnaire featuring multiple-choice and open-ended questions. Results: The majority of psychiatrists expressed concerns about treatment of this group, describing unmet needs. A total of 75% considered that antipsychotics were overused to control aggression, and 34% of psychiatrists were reluctant to treat adults with an ID. In total, 85% agreed that mental health in ID should be offered as a training option for psychiatric registrars, and that specialized mental health services would provide a high standard of care for this population. Conclusions: Broad concerns are raised regarding pathways to mental health care for adults with an ID in Australia. An Australia-wide training strategy needs to be developed. Partnerships between mental health, disability and community services that serve the mental health needs of this population, should actively seek to engage psychiatrists.

What women want : qualitative analysis of consumer evaluations of maternity care in Queensland, Australia

Background Maternity care reform plans have been proposed at state and national levels in Australia, but the extent to which these respond to maternity care consumers’ expressed needs is unclear. This study examines open-text survey comments to identify women’s unmet needs and priorities for maternity care. It is then considered whether these needs and priorities are addressed in current reform plans. Methods Women who had a live single or multiple birth in Queensland, Australia, in 2010 (n 3,635) were invited to complete a retrospective self-report survey. In addition to questions about clinical and interpersonal maternity care experiences from pregnancy to postpartum, women were asked an open-ended question “Is there anything else you’d like to tell us about having your baby?” This paper describes a detailed thematic analysis of open-ended responses from a random selection of 150 women (10% of 1,510 who responded to the question). Results Four broad themes emerged relevant to improving women’s experiences of maternity care: quality of care (interpersonal and technical); access to choices and involvement in decision-making; unmet information needs; and dissatisfaction with the care environment. Some of these topics are reflected in current reform goals, while others provide evidence of the need for further reforms. Conclusions The findings reinforce the importance of some existing maternity reform objectives, and describe how these might best be met. Findings affirm the importance of information provision to enable informed choices; a goal of Queensland and national reform agendas. Improvement opportunities not currently specified in reform agendas were also identified, including the quality of interpersonal relationships between women and staff, particular unmet information needs (e.g., breastfeeding), and concerns regarding the care environment (e.g., crowding and long waiting times).

The ASAS criteria for axial spondyloarthritis: Strengths, weaknesses, and proposals for a way forward

Classification criteria should facilitate selection of similar patients for clinical and epidemiologic studies, therapeutic trials, and research on etiopathogenesis to enable comparison of results across studies from different centers. We critically appraise the validity and performance of the Assessment of SpondyloArthritis international Society (ASAS) classification criteria for axial spondyloarthritis (axSpA). It is still debatable whether all patients fulfilling these criteria should be considered as having true axSpA. Patients with radiographically evident disease by the ASAS criteria are not necessarily identical with ankylosing spondylitis (AS) as classified by the modified New York criteria. The complex multi-arm selection design of the ASAS criteria induces considerable heterogeneity among patients so classified, and applying them in settings with a low prevalence of axial spondyloarthritis (SpA) greatly increases the proportion of subjects falsely classified as suffering from axial SpA. One of the unmet needs in non-radiographic form of axial SpA is to have reliable markers that can identify individuals at risk for progression to AS and thereby facilitate early intervention trials designed to prevent such progression. We suggest needed improvements of the ASAS criteria for axSpA, as all criteria sets should be regarded as dynamic concepts open to modifications or updates as our knowledge advances.