Factors affecting continuation of clean intermittent catheterisation in people with multiple sclerosis: Results of the COSMOS mixed-methods study.

BACKGROUND: Clean intermittent catheterisation (CIC) is often recommended for people with multiple sclerosis (MS). OBJECTIVE: To determine the variables that affect continuation or discontinuation of the use of CIC. METHODS: A three-part mixed-method study (prospective longitudinal cohort ( n = 56), longitudinal qualitative interviews ( n = 20) and retrospective survey ( n = 456)) was undertaken, which identified the variables that influenced CIC continuation/discontinuation. The potential explanatory variables investigated in each study were the individual's age, gender, social circumstances, number of urinary tract infections, bladder symptoms, presence of co-morbidity, stage of multiple sclerosis and years since diagnosis, as well as CIC teaching method and intensity. RESULTS: For some people with MS the prospect of undertaking CIC is difficult and may take a period of time to accept before beginning the process of using CIC. Ongoing support from clinicians, support at home and a perceived improvement in symptoms such as nocturia were positive predictors of continuation. In many cases, the development of a urinary tract infection during the early stages of CIC use had a significant detrimental impact on continuation. CONCLUSION: Procedures for reducing the incidence of urinary tract infection during the learning period (i.e. when being taught and becoming competent) should be considered, as well as the development of a tool to aid identification of a person's readiness to try CIC.

The practice of hope: a longitudinal, multi-perspective qualitative study among South Asian Sikhs and Muslims with life-limiting illness in Scotland.

OBJECTIVES: We explored the role of faith and religious identities in shaping end of life experiences in South Asian Muslims and Sikhs with life-limiting illnesses. DESIGN: Secondary analysis of data from a longitudinal, multi-perspective qualitative study of the experience of life-limiting illness and access to palliative care services among South Asian Sikhs and Muslims in Scotland. Up to three semi-structured interviews were conducted with 25 participants, 15 family members and 20 health care professionals over a period of 18 months. Analysis was informed by Mattingly's theory on hope. RESULTS: Hope emerged as a central construct in the accounts of illness constructed by the participants as they struggled to make sense of and uphold a meaningful life. Clinical encounters and, for some, religious beliefs served as sources of hope for participants. Hope unfolded as an active process that enabled them to live with the personal and in particular the social ramifications of their illness. Changing images of hope were formulated and reflected as illness progressed or treatments failed. These ranged from hoping for cure, prolonged life, the regaining of lost capabilities needed to fulfil social roles, or at times death when suffering and the consequences for the family became too hard to bear. CONCLUSIONS: For those suffering from a life-limiting illness, sustaining hope is a complex challenge. The social character of hope is evident as it focuses on envisioning a life that is worth living, not only for oneself, but most importantly for social relations. Continuity in care at the end of life and a holistic approach is important in order to enable patients to articulate complex and changing notions of hope that at times are silenced within families, and for patients to feel confident in discussing the possible role of religious beliefs in shaping personal notions of hope.

Intermittent self-catheterisation in MS.

People with multiple sclerosis may experience complex bladder problems; intermittent self-catheterisation can be used in cases of incomplete bladder emptying. This literature review examines the qualitative research on the use of ISC in patients with MS, focusing on concordance, training and quality of life.

Influence of culture, religion and experience on the decision of Pakistani women in Lothian, Scotland to use postnatal contraception: a qualitative study.

INTRODUCTION: Evidence suggests that Pakistani women may experience difficulty accessing postnatal contraceptive (PNC) services. The study aimed to identify experience and decision-making around PNC provision for Pakistani women in Lothian, and to explore the views and experience of maternity staff who provide PNC counselling. METHODS: Qualitative research including focus groups and 1:1 semi-structured interviews with women and staff. Participants were first- and second-generation Pakistani women with a child/children aged up to 5 years, or pregnant; community and hospital midwives, obstetric doctors who counsel or provide PNC. Data were coded and categorised using QSR NVIVO10. Inductive thematic analysis was carried out. RESULTS: Women were receptive to discussion of contraception, including antenatally, and welcomed translated information. Some said the decision on PNC was theirs or made jointly with their husband; however, they acknowledged that in some marriages the husband will take the decision. Women stated they may face family expectation to have a baby early in marriage. Language was identified as a challenge by maternity staff, who utilised translation services to ensure women received the information they needed on contraception. CONCLUSIONS: Pakistani women value antenatal discussion about PNC. Maternity staff have an important role in providing quality information on contraception and should be supported with translated resources in a range of formats. Most importantly, staff should adopt a tailored approach to identify the individual woman's needs and preferences.

Understanding the experiences of allergy testing: a qualitative study of people with perceived serious allergic disorders.

PURPOSE: To investigate the experience of patients with perceived severe allergic disorders in obtaining allergen testing. DESIGN: In-depth interviews with 20 purposively sampled adults and parents of children with, or at perceived risk of, serious allergic problems. Data were analysed thematically, drawing on Frank's classification of narratives to help interpret patient/career accounts. RESULTS: Accounts fell into four main groups: (i) children with anaphylaxis occurring 'out of the blue' (ii) children in whom the recognition of severe allergy by professionals was perceived as delayed; (iii) adults with anaphylaxis who adapted; and (iv) adults who remained in search of an answer. Whereas children had eventually been assessed and tested in a specialist clinic, adults had difficulty in obtaining testing, and most-including those for whom current guidelines would recommend testing-had not been tested. Participants incorporated their past experience of testing into narrative accounts, which included current ways of dealing with their allergy. They saw testing as only one component of appropriate allergy management which required interpretive expertise in professionals who ordered tests. Despite the limitations in NHS allergy testing provision, there was relatively little interest among patients/carers in using complementary and alternative providers of allergy testing. CONCLUSIONS: Patients perceived major shortfalls in relation to NHS allergy testing provision, focusing on both the availability of testing and expertise in interpreting the results. Any increased provision of testing needs to be matched by access to specialist interpretation of these tests.

Social support for South Asian Muslim parents with life-limiting illness living in Scotland: a multiperspective qualitative study.

OBJECTIVE: To explore experiences of social support needs among South Asian Muslim patients with life-limiting illness, living in Scotland, who are parents of young children. DESIGN: Secondary analysis of data from a multiperspective, longitudinal Scottish study involving in-depth semistructured interviews with patients, their nominated carers and healthcare professionals. Data were analysed using interpretive phenomenological analysis. SETTING: Edinburgh, Scotland. PARTICIPANTS: South-Asian Muslim patients with life-limiting illness with children under the age of 18 (n=8), their carer (n=6) and their healthcare professional. MAIN OUTCOME MEASURES: Access and provision of social support in palliative care. RESULTS: Open-ended qualitative interviews identified four main themes: (1) parental sadness over being unable to provide tangible support; (2) parental desire to continue to provide emotional support; (3) limited availability of informal social support networks; and (4) differing perspectives between healthcare professionals and patients on patient access to social support sources, with a subtheme being the capacity of male carers to provide social support. South-Asian parents at the end of life had limited access to extended-network support. Gender roles appeared as challenging for healthcare providers who at times overestimated the amount of support a female carer could provide and underestimated the amount of support male carers provided. Implications for practice include the need for greater awareness by healthcare providers of the social support needs of ethnic minority and migrant parents with life-limiting illnesses and especially an awareness of the importance of the role of male and female carers. Further research is needed to explore how the timing of migration impacts the need for and availability of tangible and emotional informal social support among ethnic minority parents with life-limiting illness.

Vulnerability and access to care for South Asian Sikh and Muslim patients with life limiting illness in Scotland: prospective longitudinal qualitative study.

OBJECTIVES: To examine the care experiences of South Asian Sikh and Muslim patients in Scotland with life limiting illness and their families and to understand the reasons for any difficulties with access to services and how these might be overcome. DESIGN: Prospective, longitudinal, qualitative design using in-depth interviews. SETTING: Central Scotland. PARTICIPANTS: 25 purposively selected South Asian Sikh and Muslim patients, 18 family carers, and 20 key health professionals. RESULTS: 92 interviews took place. Most services struggled to deliver responsive, culturally appropriate care. Barriers to accessing effective end of life care included resource constrained services; institutional and, occasionally, personal racial and religious discrimination; limited awareness and understanding among South Asian people of the role of hospices; and difficulty discussing death. The most vulnerable patients, including recent migrants and those with poor English language skills, with no family advocate, and dying of non-malignant diseases were at particularly high risk of inadequate care. CONCLUSIONS: Despite a robust Scottish diversity policy, services for South Asian Sikh and Muslim patients with life limiting illness were wanting in many key areas. Active case management of the most vulnerable patients and carers, and "real time" support, from where professionals can obtain advice specific to an individual patient and family, are the approaches most likely to instigate noticeable improvements in access to high quality end of life care. Improving access to palliative care for all, particularly those with non-malignant illnesses, as well as focusing on the specific needs of ethnic minority groups, is required.