A systematic review of quantitative studies reporting selected patient experienced outcomes, with a specific focus on gender differences in people with colorectal cancer

Men with colorectal cancer have a higher mortality rate than their female counterparts. Despite this, there is a limited understanding of the impact gender has on the experience of colorectal cancer.

Help needed in medication self-management for people with visual impairment: case-control study

Background: Visual impairment (VI) is rising in prevalence and contributing to increasing morbidity, particularly among older people. Understanding patients' problems is fundamental to achieving optimal health outcomes but little is known about how VI impacts on self-management of medication.

Aim: To compare issues relating to medication self-management between older people with and without VI.

Design and setting: Case-control study with participants aged =65 years, prescribed at least two long-term oral medications daily, living within the community.

Method: The study recruited 156 patients with VI (best corrected visual acuity [BCVA] 6/18 to 3/60) at low-vision clinics; community optometrists identified 158 controls (BCVA 6/9 or better). Researchers visited participants in their homes, administered two validated questionnaires to assess medication adherence (Morisky; Medication Adherence Report Scale [MARS]), and asked questions about medication self-management, beliefs, and support.

Results: Approximately half of the participants in both groups reported perfect adherence on both questionnaires (52.5% Morisky; 43.3%, MARS). Despite using optical aids, few (3%) with VI could read medication information clearly; 24% had difficulty distinguishing different tablets. More people with VI (29%) than controls (13%) (odds ratio [OR] = 2.8; 95% confidence interval [CI] = 1.6 to 5.0) needed help managing their medication, from friends (19% versus 10%) or pharmacists (10% versus 2.5%; OR = 4.4, 95% CI = 1.4 to 13.5); more received social service support (OR = 7.1; 95% CI = 3.9 to 12.9).

Conclusion: Compared to their peers without VI, older people with VI are more than twice as likely to need help in managing medication. In clinical practice in primary care, patients' needs for practical support in taking prescribed treatment must be recognised. Strategies for effective medication self-management should be explored.

Minding the Gap: Children with Disabilities and the United Nations Convention on the Rights of Persons with Disabilities

This chapter provides a critical assessment of the approach adopted by the United Nations Convention on the Rights of Persons with Disabilities (CRPD) towards children with disabilities and its implications for socializing States Parties to both ‘right’ and ‘rights’ behaviour. It discusses the ways in which ‘rights talk’ for children with disabilities, itself a relatively recent development in this context, has been predominantly needs based in its substantive content, and explores whether the exacerbated disadvantage experienced by children with disabilities as a result of the particular interaction between disability and childhood is effectively addressed and given due weight by the new Convention. The CRPD's provisions are discussed in the context of children with disabilities and their potential to provide effective redress assessed. The chapter concludes with some critical reflections on the extent to which the CRPD can really be understood as minding the gap for children with disabilities.

Content validity of the Illness Perception Questionnaire-Revised for people with Type 2 Diabetes: A Think-Aloud study

Objectives: To access the cognitions of adults with type 2 diabetes whilst completing items on the Illness Perceptions Questionnaire – Revised (IPQ-R). To determine whether these cognitions are congruent with the meaning of items and subscales as interpreted by researchers and clinicians using the IPQ-R and to identify the nature and extent of problems that individuals experience when completing the IPQ-R.
Design: Participants (n=36) were recruited from a primary care diabetes clinic and a hospital diabetes clinic. They were asked to complete the IPQ-R using a ‘think-aloud’ methodology.
Main Outcome Measures: Transcripts were analysed to identify instances where participants expressed problems with item completion, or where there was inconsistency between verbal and written responses.
Results: The most problematic subscales were those of ‘personal control’ and ‘consequences’.
Conclusion: Generally, participants found the IPQ-R unproblematic. However, participants had problems with the concept of ‘cure’ and ‘symptoms’ in the context of type 2 diabetes, and with the negative phrasing used in some items. These findings have important implications for the interpretation of IPQ-R scores, particularly when the IPQ-R is used as the basis for individualised interventions among people with type 2 diabetes.

The experiences of palliative care health service provision for people with non-malignant respiratory disease and their caregivers: an all-Ireland study

Aim: To explore the perception of palliative care provision for people with non-malignant respiratory disease from the perspective of bereaved caregivers.

Background: It is recognized that the majority of patients diagnosed with a malignant disease will have access to palliative care provision. However, it is less clear if the same standards of palliative care are available to those with non-malignant respiratory disease in Northern Ireland and the Republic of Ireland.

Design: A qualitative study based on broad interpretivism.

Methods: This research is a PhD study funded by the Department of Education and Learning in Northern Ireland (awarded February 2011). Data collection will consist of two stages; interviews with 20 bereaved caregivers of people who have died 3–18 months previously with a diagnosis of non-malignant respiratory disease and four focus groups with healthcare professionals involved in the care of this client group. This study will be carried out at four healthcare sites across the Island of Ireland. The data will be analysed using thematic content analysis. Research Ethics committee approval was obtained (March 2012).

Discussion: This research will explore the experiences of patients with Chronic Obstructive Pulmonary Disease, Interstitial Lung Disease and Bronchiectasis and their caregivers from the perspective of the bereaved caregiver. The outcomes of this study will provide a critical first step in the development of more responsive palliative care for this client group and have important implications for future practice and policy in the palliative care provided to this client group.

Professionals delivering palliative care to people with COPD: qualitative study

This article describes health and social care professionals' perceptions of palliative care and facilitators and barriers to the delivery of such care for patients with advanced chronic obstructive pulmonary disease. Health professionals participated in semi structured interviews and focus groups which were analysed using content analysis. According to participants, care of patients with chronic obstructive pulmonary disease is focused upon the management of symptoms, with emphasis focused predominately on an acute model of care. Key barriers towards the delivery of palliative care included the reluctance to negotiatie end-of-life decisions and a perceived lack of understanding among patients and carers regarding the illness trajectory. Consequently the delivery of palliative care was viewed as a specialist role rather than an integral component of care. There is a need for education and training for health and social care professions to plan and provide high quality end-of-life care.

An exploration into the palliative and end-of-life experiences of carers of people with Parkinson's disease

Although most people with Parkinson's disease are cared for in the community, little is known about family members' lived experiences of palliative or end-of-life care. The aim of this study was to explore former carers' lived experiences of palliative and end-of-life care. In total, 15 former family caregivers of patients who had died with Parkinson's disease were interviewed using a semi-structured topic list. Findings indicated that some palliative and end-of-life care needs had not been fully addressed. Lack of communication, knowledge and coordination of services resulted in many people caring for someone with Parkinson's disease not accessing specialist palliative care services. Participants also reflected upon the physical and psychological impact of caring in the advanced stage of Parkinson's. A multi-disciplinary team-based approach was advocated by participants. These findings provide important insights into the experience of caregiving to patients with Parkinson's disease in the home at the end-of-life stage. According to palliative care standards, patients and their carers are the unit of care; in reality, however, this standard is not being met.

Experiences and needs of bereaved carers during palliative and end-of-life care for people with chronic obstructive pulmonary disease

This study explored the experiences of palliative care that bereaved carers had while providing care to a dying loved one with chronic obstructive pulmonary disease (COPD).

Method: Semi-structured interviews were undertaken with nine carers whohad lost a loved one in the preceding 6 to 24 months.These interviews explored levels of satisfaction with disease management, symptom management, and end-of-life care. With permission, interviews were tape recorded, transcribed, and subjected to content analysis.

Findings: Three themes emerged from the data: the impact of the caring experience, the lack of support services, and end-of-life and bereavement support. Carers experienced carer burden, lack of access to support services, a need for palliative care, and bereavement support.

Conclusion: The findings provide a first insight into the experiences of carers of patients with advanced COPD. Bereaved carers of patients who had suffered advanced COPD reported that they had received inadequate support and had a range of unmet palliative care needs. Special attention should be paid to educating and supporting carers during their caring and bereavement periods to ensure that their quality of life is maintained or enhanced

Cognitive biases for trauma stimuli in people with schizophrenia

This study investigates whether cognitive biases related to trauma (physical and sexual trauma) are present in a sample of participants with a diagnosis of schizophrenia.

ALCOHOL-RELATED KNOWLEDGE AND ATTITUDES IN PEOPLE WITH A MILD LEARNING-DISABILITY - THE EFFECTS OF A SENSIBLE DRINKING GROUP

Alcohol-related knowledge and attitudes in people with a mild learning disability, who were either living, or being prepared to live, in relatively independent conditions in the community, were assessed through a structured interview format. Compared with non-learning-disabled teenagers, adults and a hospitalized patient sample, alcohol-related knowledge in the people with a learning disability was found to be significantly poorer, alcohol was reported as having particularly negative effects and susceptibility to social pressure to drink alcohol was greater. A 'sensible drinking' group, taking a social skills and influences approach to alcohol education, was conducted with a subgroup of the individuals with a learning disability. The group format and methods, including in vivo sessions in a public house, are described. Follow-up evaluations suggested some significant positive changes in knowledge, attitudes and sensible drinking skills. It is concluded that this population, which is increasingly living, or being moved into, independent conditions in the community, is at least as vulnerable to social influences on alcohol use and abuse as are young people. As with young people, the usefulness of making available such alcohol-education programmes as described in this study, is discussed.

Would people with Parkinson's disease benefit from palliative care?

Parkinson's disease (PD) is a chronic, progressive, degenerative disorder of the nervous system, causing substantial morbidity and has the capacity to shorten life. People with PD and their families can find the disease devastating. Nevertheless, this population of patients is not usually considered a group to be supported by palliative care specialists. But the nature of the illness and the challenges of managing its many physical and psychological effects raises questions about the potential benefits of a palliative care approach. The purpose of this project was to describe the experience of PD and consider the relevance of palliative care for this population. Semi-structured interviews were conducted with eight people with PD, 21 family caregivers and six health professionals. Five themes were developed from the data analysis: (1) emotional impact of diagnosis; (2) staying connected; (3) enduring financial hardship; (4) managing physical challenges; and (5) finding help for advanced stages. These data revealed that people with PD and family caregivers are confronted with similar issues to people with typical palliative care diagnoses, such as advanced cancer, and that a palliative approach may be helpful in the care of people with PD and their families.

Complementary Therapy: perceptions of older people with lung or colorectal cancer

Aim: To explore how older people with lung and colorectal cancer
view registered complementary therapy (CT) services in Northern
Ireland. Background: A literature review highlighted gaps around
information, access, and communication between patients and health
professionals regarding CT services. Methods: Using structured
interviews, a survey of 68 patients in one hospital and one hospice was
conducted in Belfast, Northern Ireland. Results: All respondents felt
that CT services should be better promoted and more easily
accessible to older people with cancer. Some patients were concerned
about the lack of written information provided regarding CT services,
which they believed led to poorer uptake and uncertainty regarding
the potential benefits. Others were concerned that engaging in or
disclosing CT usage might negatively affect existing relationships with
medical professionals. Conclusion: Patients should be offered high
quality written information on CT services to enable choice, improve
knowledge, and promote wider access. Increased physician education
may facilitate provision of such information.