Assessing knowledge and attitudes towards screening among users of Faecal Immunochemical Test (FIT)

Background

Informed decision making is recognized as important in screening. Invitees should be provided with relevant information, enabling them to make an informed decision. This may be more difficult in ethnic minority and low socio‐economic status groups. We aimed to assess the proportion of informed decisions to participate in a faecal immunochemical test (FIT)‐based colorectal cancer (CRC) screening pilot and to explore differences in knowledge and attitude across various subgroups.

Methods

Asymptomatic persons aged 50–74 were invited to a second round of a Dutch FIT‐based pilot screening programme for CRC. An information leaflet containing all information relevant to enable informed decision making accompanied the invitation. Informed choice was assessed by a mailed questionnaire. Knowledge was elicited through 18 items and attitude towards screening through four items. Main outcome measure was the proportion of informed decision makers among participants. Differences between subgroups were evaluated using logistic regression.

Results

Of 5367 screening participants, 2774 (52%) completed the questionnaire. Knowledge was adequate in 2554 (92%); 2736 (99%) showed a positive attitude towards screening. A total of 2525 persons had made an informed choice (91%); male gender, low education level, non‐Dutch ethnicity and not speaking Dutch at home were negatively associated with having adequate knowledge in multivariable analysis.

Conclusion

In FIT‐based screening for CRC, the majority of responders made an informed decision to participate. However, we did not succeed in equally providing all population subgroups with sufficient information. Future initiatives should be aimed at reaching these groups to further enable informed decision making.     

Presenting life with cystic fibrosis: a Q‐methodological approach to developing balanced,experience‐based prenatal screening information

Background

Cystic fibrosis (CF) is one of the most common life‐threatening genetically inherited conditions and prenatal screening for CF is available in many countries. Genetic counsellors and other health professionals are expected to provide information about the condition in a way that facilitates personal decision making. Knowing what information to deliver about complex genetic conditions to support informed screening decisions can be challenging for health professionals.

Objective

To solicit views from those with personal experience with CF on which aspects of the condition they consider most important to include in prenatal screening materials.

Methods

Q‐methodology; an approach to systematically explore variations in viewpoint that combines factor analytic techniques with qualitative approaches to pattern interpretation. Setting and Participants: Twelve adults with CF and 18 parents of affected children were recruited from a regional centre in the UK.

Results

Five distinct viewpoints on the items most and least important to include in screening information were identified: Factor 1 the normality of life with CF and increasing life expectancy; Factor 2 the hardships and reduced lifespan. Factor 3 medical interventions and the importance of societal support. Factor 4 longer‐term consequences of CF. Factor 5 the ability to adjust to the condition.

Discussion

The identification of five different views on what represented the most and least important information to include about CF highlights the challenge of portraying a complex genetic condition in a balanced and accurate manner. Novel ways in which Q‐methodology findings can be used to meet this challenge are presented.     

Immigrant women's experiences and views on the prevention of cervical cancer: a qualitative study

Background

Many Western countries have cervical cancer screening programmes and have implemented nation‐wide human papillomavirus (HPV) vaccination programmes for preventing cervical cancer.

Objective

To explore immigrant women''s experiences and views on the prevention of cervical cancer, screening, HPV vaccination and condom use.

Design

An exploratory qualitative study. The Health Belief Model (HBM) was used as a theoretical framework.

Setting and participants

Eight focus group interviews, 5–8 women in each group (average number 6,5), were conducted with 50 women aged 18–54, who studied Swedish for immigrants. Data were analysed by latent content analysis.

Results

Four themes emerged: (i) deprioritization of women''s health in home countries, (ii) positive attitude towards the availability of women''s health care in Sweden, (iii) positive and negative attitudes towards HPV vaccination, and (iv) communication barriers limit health care access. Even though the women were positive to the prevention of cervical cancer, several barriers were identified: difficulties in contacting health care due to language problems, limited knowledge regarding the relation between sexual transmission of HPV and cervical cancer, culturally determined gender roles and the fact that many of the women were not used to regular health check‐ups.

Conclusion

The women wanted to participate in cervical cancer prevention programmes and would accept HPV vaccination for their daughters, but expressed difficulties in understanding information from health‐care providers. Therefore, information needs to be in different languages and provided through different sources. Health‐care professionals should also consider immigrant women''s difficulties concerning cultural norms and pay attention to their experiences.     

Will the introduction of non‐invasive prenatal testing for Down's syndrome undermine informed choice?

Objective

To investigate whether the introduction of non‐invasive pre‐natal testing for Down''s syndrome (DS) has the potential to undermine informed choice.

Participants

Three hundred and ninety‐three health professionals; 523 pregnant women.

Methods

A cross‐sectional questionnaire study across nine maternity units and three conferences in the UK designed to assess opinions regarding test delivery and how information should be communicated to women when offered Down''s syndrome screening (DSS) or diagnosis using invasive (IDT) or non‐invasive testing (NIPT).

Results

Both pregnant women and health professionals in the NIPT and DSS groups were less likely than the IDT group to consider that testing should take place at a return visit or that obtaining written consent was necessary, and more likely to think testing should be carried out routinely. Compared to health professionals, pregnant women expressed a stronger preference for testing to occur on the same day as pre‐test counselling (P = 0.000) and for invasive testing to be offered routinely (P = 0.000). They were also more likely to indicate written consent as necessary for DSS (P = 0.000) and NIPT (P < 0.05).

Conclusions

Health professionals and pregnant women view the consenting process differently across antenatal test types. These differences suggest that informed choice may be undermined with the introduction of NIPT for DS into clinical practice. To maintain high standards of care, effective professional training programmes and practice guidelines are needed which prioritize informed consent and take into account the views and needs of service users.     

Is the Give Youth a Voice questionnaire an appropriate measure of teen‐centred care in paediatric oncology: a Rasch measurement theory analysis

Background

Adolescents have their own views about the cancer care they receive and how they feel they are treated, but their opinions are rarely solicited.

Objective

To determine whether the 56‐item Give Youth a Voice (GYV‐56), its subscales and its 20‐item short‐form, are clinically meaningful and psychometrically sound instruments that can be used to measure teen‐centred care (TCC) in paediatric oncology.

Design

Qualitative interviews and a questionnaire survey.

Setting and participants

Qualitative interviews with 38 childhood cancer survivors. GYV‐56 data collected from 200 paediatric cancer patients and survivors.

Main outcome measure

The GYV‐56, which measures the following four aspects of service delivery: Supportive and respectful relationships; Information sharing and communication; Supporting independence; and Teen‐centred services.

Results

Qualitative data provided broad support for the TCC conceptual framework and GYV‐56 items. After post‐hoc reduction of the response options from 7 to 3 (to correct for disordered thresholds), fit to the Rasch model was good, most items showed acceptable fit residuals and chi‐square P‐values, scale reliability were supported and item locations defined a continuum for TCC that was well‐targeted to the sample. By calibrating the items for each subscale and the short‐form to the full scale, the scores obtained on each measure are directly comparable.

Conclusion

Our study found initial support for use of the GYV with a reduced response option format for examining TCC in the adolescent oncology patients. in this paediatric population. Further research using the GYV is needed to elaborate upon our findings.     

Effect of intervention on decision making of treatment for disease progression,prostate‐specific antigen biochemical failure and prostate cancer death

Background

Patient preference for the choice of treatment modality for prostate cancer has increasingly gained attention.

Objective

To assess the impact of client‐oriented decision on long‐term mortality, disease progression and biochemical failure compared with standard treatment protocol (TP).

Methods

With data from a Finnish multicentre, randomized controlled trial with two arms [104 in the enhanced patient participation (EPP) arm and 106 in the TP arm], disease‐specific and disease‐free survival, biochemical failure with elevated prostate‐specific antigen (PSA) level and disease progression were compared between the two arms using Wilcoxon test and also Cox proportional hazards regression model.

Results

Patients in the EPP arm had a higher risk of death by 37% [HR, 1.37 (0.87–2.17)] compared with those in the TP arm. Patients in the EPP arm were at increased risk of having biochemical failure by 14% [HR, 1.14 (0.72–1.79)] and for having disease progression by 2% [HR, 1.02 (0.61–1.70)] compared with those in the TP arm. All the differences were non‐significant.

Conclusions

Patients actively involved in the choice of treatment had higher risk of prostate cancer death but only slightly increased risk of biochemical failure and clinical disease progression. These findings would provide a good reference when patient autonomy for the choice of treatment modality is addressed.     

Patient perceptions of patient‐centred care: empirical test of a theoretical model

Aim

Patient perception measures are gaining increasing interest among scholars and practitioners. The aim of this study was to empirically examine a conceptual model of patient‐centred care using patient perception survey data.

Background

Patient‐centred care is one of the Institute of Medicine''s objectives for improving health care in the 21st century. Patient interviews conducted by the Picker Institute/Commonwealth Fund in the 1980s resulted in a theoretical model and survey questions with dimensions and attributes patients defined as patient‐centered.

Method

The present study used survey data from patients with overnight visits at 142 U.S. hospitals.

Results

Regression analysis found significant support for the theoretical model. Perceptions of emotional support had the strongest relationship with overall care ratings. Coordination of care, and physical comfort were strongly related as well.

Conclusion

Understanding how patients experience their care can help improve understanding of what patients believe is patient‐centred, and of how care processes relate to important patient outcomes.     

Mapping the impact of patient and public involvement on health and social care research: a systematic review

Background

There is an increasing international interest in patient and public involvement (PPI) in research, yet relatively little robust evidence exists about its impact on health and social care research.

Objective

To identify the impact of patient and public involvement on health and social care research.

Design

A systematic search of electronic databases and health libraries was undertaken from 1995 to 2009. Data were extracted and quality assessed utilizing the guidelines of the NHS Centre for Reviews and Dissemination 2009 and the Critical Appraisal Skills Programme (CASP). Grey literature was assessed using the Dixon‐Woods et al. (2005) checklist.

Inclusion criteria

All study types that reported the impact PPI had on the health and/or social care research study.

Main results

A total of 66 studies reporting the impact of PPI on health and social care research were included. The positive impacts identified enhanced the quality and appropriateness of research. Impacts were reported for all stages of research, including the development of user‐focused research objectives, development of user‐relevant research questions, development of user‐friendly information, questionnaires and interview schedules, more appropriate recruitment strategies for studies, consumer‐focused interpretation of data and enhanced implementation and dissemination of study results. Some challenging impacts were also identified.

Conclusion

This study provides the first international evidence of PPI impact that has emerged at all key stages of the research process. However, much of the evidence base concerning impact remains weak and needs significant enhancement in the next decade.     

Assessments of the extent to which health‐care providers involve patients in decision making: a systematic review of studies using the OPTION instrument

Background

We have no clear overview of the extent to which health‐care providers involve patients in the decision‐making process during consultations. The Observing Patient Involvement in Decision Making instrument (OPTION) was designed to assess this.

Objective

To systematically review studies that used the OPTION instrument to observe the extent to which health‐care providers involve patients in decision making across a range of clinical contexts, including different health professions and lengths of consultation.

Search strategy

We conducted online literature searches in multiple databases (2001–12) and gathered further data through networking.

Inclusion criteria

(i) OPTION scores as reported outcomes and (ii) health‐care providers and patients as study participants. For analysis, we only included studies using the revised scale.

Data extraction

Extracted data included: (i) study and participant characteristics and (ii) OPTION outcomes (scores, statistical associations and reported psychometric results). We also assessed the quality of OPTION outcomes reporting.

Main results

We found 33 eligible studies, 29 of which used the revised scale. Overall, we found low levels of patient‐involving behaviours: in cases where no intervention was used to implement shared decision making (SDM), the mean OPTION score was 23 ± 14 (0–100 scale). When assessed, the variables most consistently associated with higher OPTION scores were interventions to implement SDM (n = 8/9) and duration of consultations (n = 8/15).

Conclusions

Whatever the clinical context, few health‐care providers consistently attempt to facilitate patient involvement, and even fewer adjust care to patient preferences. However, both SDM interventions and longer consultations could improve this.     

Having diabetes and having to fast: a qualitative study of British Muslims with diabetes

Background

There are approximately 2.7 million Muslims in the UK, constituting 4.8% of the population. It is estimated that 325 000 UK Muslims have diabetes. Whilst dietary practices of Muslims with diabetes have been explored, little work has described the beliefs and decisions to fast during Ramadan, whereby Muslims with diabetes refrain from eating, drinking and taking medication between sunrise and sunset.

Objective

To explore beliefs and experiences of fasting during Ramadan of Muslim respondents with diabetes and their perceptions of the role played by their general practitioner (GP) and/or practice nurse (PN) in supporting them.

Design

Qualitative study.

Setting

General practices and community groups located in Greater Manchester.

Participants

23 South Asian Muslims.

Methods

Semi‐structured interviews were conducted as part of the Collaboration of Applied Health Research and Care (CLAHRC) programme, Greater Manchester. Respondents were recruited using random and purposive sampling techniques. Interviews were analysed thematically using a constant comparison approach.

Results

Thirteen respondents reported they fasted and altered diabetes medication and diet during Ramadan. The decision to fast was influenced by pressures from the family and the collective social aspect of fasting, and respondents made limited contact with primary care during fasting.

Conclusion

Tensions exist between the respondent''s personal desire to fast or not fast and their family''s opinion on the matter, with a strong reluctance to disclose fasting to GP and/or PN. Future research needs to explore whether GPs or PNs feel competent enough to support patients who wish to fast.     

Survey of patients' experiences and perceptions of care provided by nurse and pharmacist independent prescribers in primary care

Background

In the United Kingdom, nurses and pharmacists who have undertaken additional post‐registration training can prescribe medicines for any medical condition within their competence (non‐medical prescribers, NMPs), but little is known about patients'' experiences and perceptions of this service.

Objective

to obtain feedback from primary care patients on the impact of prescribing by nurse independent prescribers (NIPs) and pharmacist independent prescribers (PIPs) on experiences of the consultation, the patient–professional relationship, access to medicines, quality of care, choice, knowledge, patient‐reported adherence and control of their condition.

Design

Two cross‐sectional postal surveys.

Setting and participants

Patients prescribed for by either NIPs or PIPs in six general practices from different regions in England.

Results

30% of patients responded (294/975; 149/525 NIPs; 145/450 PIPs). Most said they were very satisfied with their last visit (94%; 87%), they were told as much as they wanted to know about their medicines (88%; 80%), and felt the independent prescriber really understood their point of view (87%; 75%). They had a good relationship with (89%; 79%) and confidence in (84%; 77%) their NMP. When comparing NMP and doctor prescribing services, most patients reported no difference in their experience of care provided, including access to it, control of condition, support for adherence, quality and safety of care.

Discussion and conclusions

Patients had positive perceptions and experience from their NMP visit. NMPs were well received, and patients'' responses indicated the establishment of rapport. They did not express a strong preference for care provided by either their non‐medical or medical prescriber.     

Views on traditional Chinese medicine amongst Chinese population: a systematic review of qualitative and quantitative studies

Background

Health‐care professionals worldwide have started to appreciate patients'' perspectives on the use of complementary and alternative medicine (CAM) particularly given its popularity. However, cultural perspectives may vary and it may not be possible to apply research findings on the use of CAM from the west to the east.

Objective

This systematic review aims to synthesize usage patterns of traditional Chinese medicine (TCM) amongst Chinese populations in different parts of the world and explore potential geographical variations.

Search strategy

Six international and four Chinese databases were searched, and manual searches of relevant monographs and government publications were carried out.

Inclusion criteria

Quantitative, qualitative or mixed‐method research that aimed to investigate Chinese patients'' perception of, and perspectives on, TCM was included.

Data extraction and synthesis

For each study included, texts under the headings of ‘results’ or ‘findings’ were extracted and subjected to analysis. A thematic synthesis approach was adopted for synthesizing qualitative and quantitative studies.

Main results

Amongst the 28 studies included, twenty were quantitative surveys, six were qualitative studies and two were mixed‐method studies. The overall methodological quality was mediocre. Data synthesis suggested that patients from all regions share a common cultural affinity to TCM and consider it to be an effective complement to western medicine (WM) for treating chronic or serious diseases. However, heterogeneous views on (i) disclosing TCM use to WM doctors and (ii) the potential harm of herbs emerged across different study locations.

Discussion and conclusions

Future research should explore how variation in health systems may influence patients'' perception of CAM in different countries.     

Risk assessment and clinical decision making for colorectal cancer screening

Background

Shared decision making (SDM) related to test preference has been advocated as a potentially effective strategy for increasing adherence to colorectal cancer (CRC) screening, yet primary care providers (PCPs) are often reluctant to comply with patient preferences if they differ from their own. Risk stratification advanced colorectal neoplasia (ACN) provides a rational strategy for reconciling these differences.

Objective

To assess the importance of risk stratification in PCP decision making related to test preference for average‐risk patients and receptivity to use of an electronic risk assessment tool for ACN to facilitate SDM.

Design

Mixed methods, including qualitative key informant interviews and a cross‐sectional survey.

Participants

PCPs at an urban, academic safety‐net institution.

Main Measures

Screening preferences, factors influencing patient recommendations and receptivity to use of a risk stratification tool.

Key Results

Nine PCPs participated in interviews and 57 completed the survey. Despite an overwhelming preference for colonoscopy by 95% of respondents, patient risk (67%) and patient preferences (63%) were more influential in their decision making than patient comorbidities (31%; P < 0.001). Age was the single most influential risk factor (excluding family history), with <20% of respondents choosing factors other than age. Most respondents reported that they would be likely to use a risk stratification tool in their practice either ‘often’ (43%) or sometimes (53%).

Conclusions

Risk stratification was perceived to be important in clinical decision making, yet few providers considered risk factors other than age for average‐risk patients. Providers were receptive to the use of a risk assessment tool for ACN when recommending an appropriate screening test for select patients.     

How do people interpret information about colorectal cancer screening: observations from a think‐aloud study

Background

The English NHS Bowel Cancer Screening Programme biennially invites individuals aged 60–74 to participate in screening. The booklet, ‘Bowel Cancer Screening: The Facts'' accompanies this invitation. Its primary aim is to inform potential participants about the aims, advantages and disadvantages of colorectal cancer screening.

Objective

To provide detailed commentary on how individuals process the information contained within ‘The Facts’ booklet.

Design, setting and participants

This study comprised of 18 interviews with individuals aged 45–60 and used a ‘think‐aloud’ paradigm in which participants read aloud the booklet. Participant utterances (verbal statements made in response to researcher‐led prompts) were transcribed and analysed using a combination of content and thematic analysis.

Results

A total of 776 coded utterances were analysed (mean = 43.1 per person; range = 8–95). While overall comprehension was satisfactory, several problem areas were identified such as the use of complex unfamiliar terminology and the presentation of numerical information. Specific sections such as colonoscopy risk information evoked negative emotional responses. Participants made several suggestions for ways in which comprehension might be improved.

Conclusion

Public perceptions of the NHS Bowel Cancer Screening Programme information materials indicated that specific aspects of the booklet were difficult to process. These materials may be an appropriate target to improve public understanding of the aims, benefits and disadvantages of colorectal cancer screening. These findings will contribute to a broader NIHR‐funded project that aims to design a supplementary ‘gist‐based’ information leaflet suitable for low literacy populations.     

Introducing the patient's perspective in hospital health technology assessment (HTA): the views of HTA producers,hospital managers and patients

Background

The recent establishment of health technology assessment (HTA) units in University hospitals in the Province of Quebec (Canada) provides a unique opportunity to foster increased participation of patients in decisions regarding health technologies and interventions at the local level. However, little is known about factors that influence whether the patient''s perspective is taken into consideration when such decisions are made.

Objective

To explore the practices, perceptions and views of the various HTA stakeholders concerning patient involvement in HTA at the local level.

Method

Data were collected using semi‐structured interviews with 24 HTA producers and hospital managers and two focus groups with a total of 13 patient representatives.

Results

Patient representatives generally showed considerable interest in being involved in HTA. Our findings support the hypothesis that the patient perspective contributes to a more accurate and contextualized assessment of health technologies and produces HTA reports that are more useful for decision makers. They also suggest that participation throughout the assessment process could empower patients and improve their knowledge. Barriers to patient involvement in HTA at the local level are also discussed as well as potential strategies to overcome them.

Discussion and conclusion

This study contributes to knowledge that could guide interventions in favour of patient participation in HTA activities at the local level. Experimenting with different patient involvement strategies and assessing their impact is needed to provide evidence that will inform future interventions of this kind.     

Choosing vs. allocating: discrete choice experiments and constant‐sum paired comparisons for the elicitation of societal preferences

Background

There is growing evidence of a reluctance to allocate health care solely on the basis of maximizing quality‐adjusted life years (QALYs). Stated preference methods can be used to elicit preferences for efficiency vs. equity in the allocation of health‐care resources.

Objective

To compare discrete choice experiment (DCE) and constant‐sum paired comparison (CSPC) methods for eliciting societal preferences.

Methods

Over a series of choice pairs, DCE respondents allocated a fixed budget to one preferred group and CSPC respondents allocated budget percentages between the groups. Questionnaires were compared in terms of completion rates, preference consistency, dominant preferences and derived attribute importance.

Results

There was no significant difference in the proportions that rated the questionnaires somewhat or extremely difficult, but a significantly greater proportion completed the DCE compared to the CSPC. Preference consistency was also higher in the DCE. The incidence of dominant preferences, including for aggregate QALYs, was low and not significantly different between questionnaires. Similarly, no CSCP respondents equalized budgets or outcomes in every task. Final health state was the most important attribute in both questionnaires, but the rankings diverged for the other attributes. Notably, the total patients'' treated attribute was important in the CSPC but insignificant in the DCE, perhaps reflecting a ‘prominence effect’.

Conclusions

Despite lower completion rates and preference consistency, CSPC may offer advantages over DCE in eliciting preferences over the distribution of resources and/or outcomes as well as attribute levels, avoiding extreme ‘all‐or‐nothing’ distributions and possibly aligning respondent attention more closely with a societal perspective.     

Comparing the nine‐item Shared Decision‐Making Questionnaire to the OPTION Scale – an attempt to establish convergent validity

Background

While there has been a clear move towards shared decision‐making (SDM) in the last few years, the measurement of SDM‐related constructs remains challenging. There has been a call for further psychometric testing of known scales, especially regarding validity aspects.

Objective

To test convergent validity of the nine‐item Shared Decision‐Making Questionnaire (SDM‐Q‐9) by comparing it to the OPTION Scale.

Design

Cross‐sectional study.

Setting and participants

Data were collected in outpatient care practices. Patients suffering from chronic diseases and facing a medical decision were included in the study.

Methods

Consultations were evaluated using the OPTION Scale. Patients completed the SDM‐Q‐9 after the consultation. First, the internal consistency of both scales and the inter‐rater reliability of the OPTION Scale were calculated. To analyse the convergent validity of the SDM‐Q‐9, correlation between the patient (SDM‐Q‐9) and expert ratings (OPTION Scale) was calculated.

Results

A total of 21 physicians provided analysable data of consultations with 63 patients. Analyses revealed good internal consistency of the SDM‐Q‐9 and limited internal consistency of the OPTION Scale. Inter‐rater reliability of the latter was less than optimal. Association between the total scores of both instruments was weak with a Spearman correlation of r = 0.19 and did not reach statistical significance.

Discussion

By the use of the OPTION Scale convergent validity of the SDM‐Q‐9 could not be established. Several possible explanations for this result are discussed.

Conclusion

This study shows that the measurement of SDM remains challenging.     

Development of a model to guide decision making in amyotrophic lateral sclerosis multidisciplinary care

Background

Patients with amyotrophic lateral sclerosis (ALS) face numerous decisions for symptom management and quality of life. Models of decision making in chronic disease and cancer care are insufficient for the complex and changing needs of patients with ALS .

Objective

The aim was to examine the question: how can decision making that is both effective and patient‐centred be enacted in ALS multidisciplinary care?

Setting and participants

Fifty‐four respondents (32 health professionals, 14 patients and eight carers) from two specialized ALS multidisciplinary clinics participated in semi‐structured interviews. Interviews were transcribed, coded and analysed thematically.

Results

Comparison of stakeholder perspectives revealed six key themes of ALS decision making. These were the decision‐making process; patient‐centred focus; timing and planning; information sources; engagement with specialized ALS services; and access to non‐specialized services. A model, embedded in the specialized ALS multidisciplinary clinic, was derived to guide patient decision making. The model is cyclic, with four stages: ‘Participant Engagement’; ‘Option Information’; ‘Option Deliberation’; and ‘Decision Implementation’.

Discussion

Effective and patient‐centred decision making is enhanced by the structure of the specialized ALS clinic, which promotes patients'' symptom management and quality of life goals. However, patient and carer engagement in ALS decision making is tested by the dynamic nature of ALS, and patient and family distress. Our model optimizes patient‐centred decision making, by incorporating patients'' cyclic decision‐making patterns and facilitating carer inclusion in decision processes.

Conclusions

The model captures the complexities of patient‐centred decision making in ALS. The framework can assist patients and carers, health professionals, researchers and policymakers in this challenging disease environment.     

Managing the pain of labour: factors associated with the use of labour pain management for pregnant Australian women

Background

Despite high rates of women''s use of intrapartum pain management techniques, little is known about the factors that influence such use.

Objective

Examine the determinants associated with women''s use of labour pain management.

Design

Cross‐sectional survey of a substudy of women from the ‘young’ cohort of the Australian Longitudinal Study of Women''s Health (ALSWH).

Setting and participants

Women aged 31–35 years who identified as being pregnant or recently given birth in the 2009 ALSWH survey (n = 2445) were recruited for the substudy. The substudy survey was completed by 1835 women (RR = 79.2%).

Main variables studied

Determinants examined included pregnancy health and maternity care [including complementary and alternative medicine (CAM)] for their most recent pregnancy and any previous pregnancies. Participants'' attitudes and beliefs related to both CAM and maternity care were also included in the analysis.

Main outcome measures

The outcome measures examined were the use of both pharmacological and non‐pharmacological pain management techniques (NPMT).

Results

Differences were seen in the effects of demographics, health service utilization, health status, use of CAM, and attitudes and beliefs upon use of intrapartum pain management techniques across all categories. The only variable that was identified as a determinant for use of all types of pain management techniques was a previous caesarean section (CS).

Discussion and conclusions

The effect of key determinants on women''s use of pain management techniques differs significantly, and, other than CS, no one determinant is clearly influential in the use of all pain management options.