The health status and health service needs of primary caregivers of cancer survivors: a mixed methods approach

This study aimed to measure the health status and care needs of people who provide informal care to cancer survivors in the UK. Semi-structured interviews were conducted with a purposive sample of 24 cancer professionals to identify the care needs of caregivers. In addition, we conducted a postal survey measuring the health and wellbeing (SF-36) and health service utilisation of 98 primary caregivers of a random sample of cancer survivors, 2-20 years post-treatment. Interviews indicated that caregivers’ needs were largely unmet. In particular, there appeared to be a need in relation to statutory health care provision, information, psychological support and involvement in decision making. There were no significant differences between survivors and caregivers in terms of mental health scores; and caregivers performed better on physical health domains compared to cancer survivors. Compared to UK norms and norms for caregivers of other chronic conditions, cancer caregivers had substantially lower scores on each SF-36 health domain. Cancer may impact negatively on an informal caregiver’s health long after treatment has ended. Providing appropriate and cancer specific information may alleviate difficulties and improve health and wellbeing. Specific concentration should be given to the development and delivery of information support for caregivers of post-treatment cancer survivors.

Assessing the needs of informal caregivers to cancer survivors: a review of the instruments

Objective: Cancer may impact negatively on an informal caregiver's health long after treatment has ended. This review identifies the self-report measures currently in use to measure caregivers need for support and determines their scientific soundness and clinical utility.

Method: A systematic electronic database search of Medline, CINAHL, PsychINFO, BNI ProQuest was conducted. The psychometric properties and clinical utility of needs assessment tools for caregivers of cancer survivors (excluding advanced disease) were extracted and summarised.

Results: Seven cancer survivor caregiver needs assessment tools were identified. Data on instrument development was well reported, although variability was noted in their structure and content. The majority demonstrated some degree of reliability and validity; only two were evaluated for test–retest reliability (CaSPUN and SPUNS) with only the SPUNS showing a high degree of reliability over time. The Health Care Needs Survey (HCNS), Needs Assessment of Family Caregivers-Cancer (NAFC-C) and Cancer Caregiving Tasks Consequences and Needs Questionnaire (CaTCoN) have been validated at various stages of the cancer continuum. Minimal data was available on responsiveness.

Conclusion: All assessment tools identified require further psychometric analysis. For research purposes, the use of the SPUNS (with its acceptable test–retest reliability) appears most appropriate; although its length may be of concern for clinical use; therefore, the shorter SCNS-P&C is likely to be more suitable for use clinically. At present, the NAFC-C demonstrates a great potential in both the research and clinical environments; however, it requires further psychometric testing before it can be fully recommended. Further analysis is necessary on ideal response formats and the meaning of a total needs score.

Building capacity in palliative care for personal support workers in long-term care through experiential learning

Background

Providing palliative care in long-term care (LTC) homes is an area of growing importance. As a result, attention is being given to exploring effective palliative care learning strategies for personal support workers (PSWs) who provide the most hands-on care to LTC residents.

The purpose of this intervention was to explore hospice visits as an experiential learning strategy to increase the capacity of PSWs in palliative care, specifically related to their new learning, and how they anticipated this experience changed their practices in LTC.

This study utilised a qualitative descriptive design.

Eleven PSWs from four Ontario LTC homes were sent to their local hospice to shadow staff for one to two days. After the visit, PSWs completed a questionnaire with open-ended questions based on critical reflection. Data were analysed using thematic content analysis.

PSWs commented on the extent of resident-focused care at the hospice and how palliative care interventions were tailored to meet the needs of residents. PSWs were surprised with the lack of routine at the hospice but felt that hospice staff prioritised their time effectively in order to meet family and client care needs. Some PSWs were pleased to see how well integrated the PSW role is on the community hospice team without any hierarchical relationships. Finally, PSWs felt that other LTC staff would benefit from palliative care education and becoming more comfortable with talking about death and dying with other staff, residents and family members.

This study highlighted the benefits of PSWs attending a hospice as an experiential learning strategy. Future work is needed to evaluate this strategy using more rigorous designs as a way to build capacity within PSWs to provide optimal palliative care for LTC residents and their family members.

PSWs need to be recognised as important members within the interdisciplinary team. PSWs who shadow staff at hospices view this experience as a positive strategy to meet their learning needs related to palliative care.

Self-reported psychosocial needs and health-related quality of life of colorectal cancer survivors

Purpose of the research
To investigate the prevalence and nature of unmet needs among colorectal cancer (CRC) survivors and the relationship between needs and quality of life (QoL).

Methods and sample
Using the Northern Ireland Cancer Registry (NICR) as a sampling frame and working in collaboration with primary care physicians or GPs, the Cancer Survivors Unmet Needs (CaSUN) questionnaire and the Quality of Life in Adult Cancer Survivors Scale (QLACS) were posted to a randomly selected sample of 600 CRC survivors.

Key results
Approximately 69% (413/600) met eligibility criteria for participating in the study; and 30% (124/413) responded to the survey. A comparative analysis of NICR data between respondents and non-respondents did not indicate any systematic bias except that respondents appeared to be younger (65 years vs. 67 years). Approximately 60% of respondents reported having no unmet needs, with 40% reporting one or more unmet health and social care needs such as fear of recurrence, information needs, difficulty obtaining travel insurance and car parking problems. QoL was significantly lower for CRC survivors who reported an unmet need. Highest scores (poorer QoL) were reported for fatigue, welfare benefits and distress recurrence.

Conclusions
Overall, the majority of CRC survivors who had care needs appeared to have needs that were mainly psychosocial in nature and these unmet needs were related to poorer QoL.

Challenges of managing medications for older people at transition points of care

In clinical practice, pharmacists play a very important role in identifying and correcting medication discrepancies as older patients move across transition points of care. With increasing complexity of health care needs of older people, these discrepancies are likely to increase. The major concern with identifying and correcting medication discrepancies is that medication reconciliation is considered a retrospective problem – that is, dealing with medication discrepancies after they have occurred. It is argued here that a more proactive stance should be taken where doctors, nurses and pharmacists collectively work together to prevent medication discrepancies from happening in the first place. Improved involvement of patients and family members will help to facilitate better management of medications across transition points of care. Efficient use of information technology aids, such as electronic medication reconciliation tools, should also assist with organizational systems problems associated with the working culture, heavy workloads, and staff and skill mix of health professionals.

Defining consensus norms for palliative care of people with intellectual disabilities in Europe using Delphi methods: A White Paper from the European Association of Palliative care

Background: People with intellectual disabilities often present with unique challenges that make it more difficult to meet their
palliative care needs.
Aim: To define consensus norms for palliative care of people with intellectual disabilities in Europe.
Design: Delphi study in four rounds: (1) a taskforce of 12 experts from seven European countries drafted the norms, based on available empirical knowledge and regional/national guidelines; (2) using an online survey, 34 experts from 18 European countries evaluated the draft norms, provided feedback and distributed the survey within their professional networks. Criteria for consensus
were clearly defined; (3) modifications and recommendations were made by the taskforce; and (4) the European Association for
Palliative Care reviewed and approved the final version.
Setting and participants: Taskforce members: identified through international networking strategies. Expert panel: a purposive sample identified through taskforce members’ networks.
Results: A total of 80 experts from 15 European countries evaluated 52 items within the following 13 norms: equity of access, communication, recognising the need for palliative care, assessment of total needs, symptom management, end-of-life decision making, involving those who matter, collaboration, support for family/carers, preparing for death, bereavement support, education/training
and developing/managing services. None of the items scored less than 86% agreement, making a further round unnecessary. In light of respondents’ comments, several items were modified and one item was deleted.
Conclusion: This White Paper presents the first guidance for clinical practice, policy and research related to palliative care for people with intellectual disabilities based on evidence and European consensus, setting a benchmark for changes in policy and practice.

People with intellectual disabilities: promoting quality end of life care

Background: Internationally concerns have been highlighted about the quality of palliative care that people with intellectual disability receive. It has also been evidenced that people with intellectual disabilities are seldom referred to hospice and palliative care services. 

Aims: This study aimed to explore the experience of health and social care professionals in providing palliative care to people with intellectual disabilities. 

Methods An exploratory, qualitative design was used. A purposive sample of thirty health and social care professionals, working in intellectual disability and palliative care services, who had provided end-of-life care to adults with intellectual disabilities, were recruited to the study following informed consent. They were asked to reflect on a case scenario of a person with intellectual disability to whom they had provided end of life care. A semi-structured interview technique, with open questions and prompts, was used to explore their experiences and insights. The narrative from the case scenarios were content analysed using a recognised framework. 

Results: Three themes emerged from the data within the case scenarios: Identifying end of life care needs, meeting support needs and empowerment in partnership. Examples of good practice and issues in practice were apparent. 

Conclusion/ Discussion: This study contributes to the developing international evidence base to enhance end of life care for people with intellectual disabilities and provides further insights into this area of practice. Funder: HSC Research and Development Doctoral Fellowship Scheme

‘Disability and HIV in Africa: Breaking the barriers to sexual health care’

Three decades in to the HIV pandemic, the issues affecting people with disabilities remains less known. Increasing attention has been given to this overlooked population when it comes to HIV prevention, treatment and care. This is related to the significant unmet sexual and reproductive health care needs facing people with disabilities worldwide. This article discusses the barriers to sexual health for people with disabilities in Africa, and presents an argument about how mainstream HIV prevention work and research does not adequately attend to the sorts of systemic barriers that exclude people with disabilities, which a more targeted, and critical approach could.

A Service Model For Delivering Care Closer to Home.

Upton Surgery (Worcestershire) has developed a flexible and responsive service model that facilitates multi-agency support for adult patients with complex care needs experiencing an acute health crisis. The purpose of this service is to provide appropriate interventions that avoid unnecessary hospital admissions or, alternatively, provide support to facilitate early discharge from secondary care. Key aspects of this service are the collaborative and proactive identification of patients at risk, rapid creation and deployment of a reactive multi-agency team and follow-up of patients with an appropriate long-term care plan. A small team of dedicated staff (the Complex Care Team) are pivotal to coordinating and delivering this service. Key skills are sophisticated leadership and project management skills, and these have been used sensitively to challenge some traditional roles and boundaries in the interests of providing effective, holistic care for the patient. This is a practical example of early implementation of the principles underlying the Department of Health’s (DH) recent Best Practice Guidance, ‘Delivering Care Closer to Home’ (DH, July 2008) and may provide useful learning points for other general practice surgeries considering implementing similar models. This integrated case management approach has had enthusiastic endorsement from patients and carers. In addition to the enhanced quality of care and experience for the patient, this approach has delivered value for money. Secondary care costs have been reduced by preventing admissions and also by reducing excess bed-days. The savings achieved have justified the ongoing commitment to the service and the staff employed in the Complex Care Team. The success of this service model has been endorsed recently by the ‘Customer Care’ award by ‘Management in Practice’. The Surgery was also awarded the ‘Practice of the Year’ award for this and a number of other customer-focussed projects.

Screening primary-care patients forgoing health care for economic reasons.

BACKGROUND: Growing social inequities have made it important for general practitioners to verify if patients can afford treatment and procedures. Incorporating social conditions into clinical decision-making allows general practitioners to address mismatches between patients' health-care needs and financial resources. OBJECTIVES: Identify a screening question to, indirectly, rule out patients' social risk of forgoing health care for economic reasons, and estimate prevalence of forgoing health care and the influence of physicians' attitudes toward deprivation. DESIGN: Multicenter cross-sectional survey. PARTICIPANTS: Forty-seven general practitioners working in the French-speaking part of Switzerland enrolled a random sample of patients attending their private practices. MAIN MEASURES: Patients who had forgone health care were defined as those reporting a household member (including themselves) having forgone treatment for economic reasons during the previous 12 months, through a self-administered questionnaire. Patients were also asked about education and income levels, self-perceived social position, and deprivation levels. KEY RESULTS: Overall, 2,026 patients were included in the analysis; 10.7% (CI95% 9.4-12.1) reported a member of their household to have forgone health care during the 12 previous months. The question "Did you have difficulties paying your household bills during the last 12 months" performed better in identifying patients at risk of forgoing health care than a combination of four objective measures of socio-economic status (gender, age, education level, and income) (R(2) = 0.184 vs. 0.083). This question effectively ruled out that patients had forgone health care, with a negative predictive value of 96%. Furthermore, for physicians who felt powerless in the face of deprivation, we observed an increase in the odds of patients forgoing health care of 1.5 times. CONCLUSION: General practitioners should systematically evaluate the socio-economic status of their patients. Asking patients whether they experience any difficulties in paying their bills is an effective means of identifying patients who might forgo health care.

An evaluation of Primary health care system in Kerala

The thesis entitled An Evaluation of Primary Health Care System in Kerala. The present study is intended to examine the working of primary health care system and its impact on the health status of people. The hypothesis tested in the thesis includes, a. The changes in the health profile require reallocation of resources of primary health care system, b. Rate of utilization depends on the quality of services provided by primary health centers, and c. There is a significant decline in the operational efficiency of the primary health care system. The major elements of primary health care stated in the report of AlmaAta International Conference on Primary Health Care (WHO, 1994)” is studied on the basis of the classification of the elements in to three: Preventive, Promotive, and Curative measures. Preventive measures include Maternal and Child Health Care including family Planning. Provision of water and sanitation is reviewed under promotive measures. Curative measures are studied using the disease profile of the study area. Collection of primary data was done through a sample survey, using pre-tested interview schedule of households of the study area. Multi stage random sampling design was used for selecting the sample. The design of the present study is both descriptive and analytical in nature. As far as the analytical tools are concerned, growth index, percentages, ratios, rates, time series analysis, analysis of variance, chi square test, Z test were used for analyzing the data. Present study revealed that no one in these areas was covered under any type of health insurance. Conclusion states that considering the present changes in the health profile, traditional pattern of resource allocation should be altered to meet the urgent health care needs of the people. Preventive and promotive measures like health education for giving awareness among people to change health habits, diet pattern, life style etc. are to be developed. Proper diagnosis and treatment of the disease at the beginning of the stage itself may help to cure majority of disease. For that, Public health policy must ensure the primary health care as enunciated at Alma- Ata international Conference. At the same time Public health is not to be treated as the sole responsibility of the government. Active community participation is an essential means to attain the goals.

Ethics of care in supporting disabled forced migrants: interactions with professionals and ethical dilemmas in health and social care in the South-East of England

This article explores the interactions between disabled forced migrants with care needs and professionals and the restrictive legal, policy and practice context that health and social care professionals have to confront, based on the findings of a qualitative study with 45 participants in the South-East of England. In-depth interviews were conducted with 15 forced migrants who had diverse impairments and chronic illnesses (8 women and 7 men), 13 family caregivers and 17 support workers and strategic professionals working in social care and the third sector in Slough, Reading and London. The legal status of forced migrants significantly affects their entitlements to health and social care provision, resulting in prolonged periods of destitution for many families. National asylum support policies, difficult working relationships with UK Border Agency, higher eligibility thresholds and reduced social care budgets of local authorities were identified as significant barriers in responding to the support needs of disabled forced migrants and family caregivers. In this context, social workers experienced considerable ethical dilemmas. The research raises profound questions about the potential and limitations of health and social care policies, provision, and practice as means of protection and support in fulfilling the human rights of forced migrants with care needs.

Unlicensed personnel administering medications to older persons living at home : a challenge for social and care services

BACKGROUND: Administration of medication to care recipients is delegated to home-care assistants working in the municipal social care, alongside responsibility for providing personal assistance for older people. Home-care assistants have practical administration skills, but lack formal medical knowledge. AIM: The aim of this study was to explore how home-care assistants perceive administration of medication to older people living at home, as delegated to them in the context of social care. METHODS: Four focus groups consisting of 19 home-care assistants were conducted. Data were analysed using qualitative content analysis. RESULTS: According to home-care assistants, health and social care depends on delegation arrangements to function effectively, but in the first place it relieves a burden for district nurses. Even when the delegation had expired, administration of medication continued, placing the statutes of regulation in a subordinate position. There was low awareness among home-care assistants about the content of the statutes of delegation. Accepting delegation to administer medications has become an implicit prerequisite for social care work in the municipality. CONCLUSIONS: Accepting the delegation to administer medication was inevitable and routine. In practice, the regulating statute is made subordinate and consequently patient safety can be threatened. The organisation of health and social care relies on the delegation arrangement to meet the needs of a growing number of older home-care recipients. IMPLICATIONS FOR PRACTICE: This is a crucial task which management within both the healthcare professions and municipal social care needs to address, to bridge the gap between statutes and practice, to create arenas for mutual collaboration in the care recipients' best interest and to ensure patient safety.

The nurse and the care to the elderly women: a social phenomenological approach

Objective: To understand how nurses see care delivery to elderly women. Methods: In this phenomenological study, ten nurses working at Primary Health Care Units were interviewed between September 2010 and January 2011. Results: In care delivery, nurses consider the elderly women's knowledge background and biographical situation, and also value the family's participation as a care mediator. These professionals have the acuity to capture these women's specific demands, but face difficulties to deliver care to these clients. Nurses expect to deliver qualified care to these women. Conclusion: The theoretical and methodological approach of social phenomenology permitted revealing that the nurse designs qualified care to elderly women, considering the possibilities in the context. This includes the participation of different social actors and health sectors, assuming collective efforts in action strategies and professional training, in line with the particularities and care needs of elderly women nurses identify.

Evaluation of the vulnerability of families assisted in Primary Care in Brazil

Objective: to characterize the profiles of families in the area covered by a Primary Health Center and to identify those in a vulnerable situation. Method: this is an epidemiological, observational, cross-sectional and quantitative study. 320 home visits were made, defined by a random sample of the areas covered by the Urban Center 1 in the city of Sao Sebastiao, in Brazil's Federal District. A structured questionnaire was used for data collection, elaborated based on the Family Development Index (FDI). Results: there was a predominance of young families, women, and low levels of schooling. The FDI permitted the identification of families in situations of "high" and "very high" vulnerability. The most critical dimensions were: "access to knowledge" and "access to work". Conclusion: the study indicated the importance of greater investments in the areas of education, work and income, and highlighted the need for the use of a wider concept of vulnerability by the health services.