To be or not to be? A caregiver's question: the lived experience of a stroke family during the first 18 months poststroke.

BACKGROUND: Disability following a stroke often requires family, commonly a spouse, to provide care enabling the stroke survivor to return home. Immediate or extended family and friends may help provide direct care or support the primary caregiver. While family members share the common stroke experience, this is lived within the context of separate lives. Research examining the individual nuances, roles and contribution of family and/or friends forming part of collective stroke networks, has largely been overlooked. AIM: This New Zealand study aimed to explore the lived experience of three stroke family members during the 18 months following a first-ever stroke. METHOD: Hermeneutic phenomenology guided the study. Informed consent was obtained prior to individual interviews conducted 6 weeks, 12 months and 18 months poststroke. FINDINGS: Three main themes emerged: (i) Being prepared, (ii) Where you stand changes the view and (iii) Relinquishing and reclaiming. Being prepared revealed how these family members anticipated the stroke and drew on personal and professional experience in facing the phenomenon. The second theme showed the influence of expectation and positionality on family members' experiences. Relinquishing and reclaiming identified loss, grief and a quest for equity in the synthesis of competing stroke survivor and caregiver desires. CONCLUSIONS: Familiarity with the caregiving role and experience of unreliable community services led stroke family members to question the primary caregiver's ability to resume caregiving following a family member's stroke. The primary caregiver was physically and emotionally spent, and rest home care for the survivor became the only self-preserving option. A new caring arrangement was formulated seeking equity for both stroke survivor and caregiver.

"It's just so bloody hard": recommendations for improving health interventions and maternity support services for disabled women.

PURPOSE: Little is known about the barriers and facilitators to pregnancy, birth and motherhood for disabled women within the New Zealand context. Our study explored this deficit with the aim of improving health care interventions and support for disabled mothers. METHODS: This paper reports on the third phase of a mixed-methods study. The first two phases used semi-structured individual and focus group interviews with disabled women, and health professionals, involved in maternity and postnatal care and has been reported elsewhere. Phase 3 utilised a modified Delphi technique with both groups of participants to seek consensus on the prioritisation of recommendations from the study. This article focuses on the disabled women's recommendations. RESULTS: In all, 20 disabled women took part in the Delphi phase of the study (28% of the cohort from Phase 1). In total, 11 key recommendations were identified by the disabled women, with the top seven discussed in detail here. CONCLUSIONS: Health professionals and health systems could, and arguably should, utilise a matrix of these recommendations to facilitate a review of service responsiveness to disabled women. Implications for Rehabilitation Becoming a mother is a potentially relevant and important rehabilitation issue for women of childbearing age who come into contact with rehabilitation services. Disabled women encounter a range of economic, attitudinal and knowledge barriers in relation to becoming mothers. Centralised sites/sources of information have potential to provide accessible and useful information for disabled women and health professionals.

New Zealand consumers' health information needs: results of an interpretive descriptive study.

INTRODUCTION: Health literacy is linked to better health outcomes and underpins effective self-management, yet over one-and-a-half million New Zealanders are known to have poor health literacy skills. An ability to access and understand health information is an important component of health literacy. Little is known, however, about New Zealand consumers' health information needs. This qualitative study sought to understand the perceptions of consumers related to their needs and use of health information. METHODS: Four focus group interviews provided data for this qualitative descriptive study. Data analysis used a thematic inductive approach. Participants were from the general population, accessed through community-based health organisations. These consumers were predominantly of New Zealand European ethnicity, female, older, and most were actively engaged in managing their health. FINDINGS: Four themes were identified: issues with current information provision; preferences for content; format; and sources of health information. These themes are described in the paper, using illustrative quotes from consumer participants. CONCLUSION: This study indicates that consumers have varied health information needs. Health professionals cannot assume that consumers all have the same health literacy skills. The ideal is to provide personalised, relevant information in a manner the consumer can understand, within the current time constraints in practice. Health professionals can support consumers in their use of different strategies to ensure their health information needs are expressed and met.

Making research real: embedding a longitudinal study in a taught research course for undergraduate nursing students.

Learning how and why scholarly research underpins and informs professional nursing practice is a continual challenge for undergraduate nursing students. They find the language and methods of research to be unfamiliar and unsettling. The work of educators thus becomes the process of breaking down barriers to students' understanding of research processes and application. Such work is increasingly important in the current era of evidence based practice, where students must be competent in sourcing, critiquing and applying research to meet real clinical questions. In response, as lecturers who taught the course, Research for Health Professionals, we have reinvented how research is taught to second year undergraduate students. This article outlines our creative approach to facilitate students learning research theory and methodology by conducting a "real-life" research study in a local retirement community.

The experiences of women (65-74 years) living with a long-term condition in the shadow of ageing.

AIMS: This paper reports on a study that explored experiences of women (65-74 years) as they grow older while living with a long-term condition. The phenomenon of focus was 'ageing with a long-term condition', rather than the experience of developing a long-term condition after reaching older adulthood. BACKGROUND: People with long-term conditions are living into older age. There is limited literature on the nexus of ageing with a long-term condition. It is known that ageing shapes and is shaped by women's experiences of living with a long-term condition. METHODS: In this interpretive descriptive study, nine women participated in a series of three focus groups held in 2007 and 2008. Transcripts were analysed thematically and participants given the opportunity to respond to the analysis. FINDINGS: 'In the shadow of ageing' was the overarching theme. The women reported that although their long-term condition remained the referent point in their daily lives, for others including health professionals, the focus was on their appearance and the effects of older age. To overcome the back-grounding of their long-term condition, the women used 'strategies already-in-place'; it became 'just another thing to deal with'. Ageing, however, remained 'a privilege'. CONCLUSION: If health professionals focus on age and its concomitant effects, rather than a woman's long-term condition, they are at risk of delivering inappropriate care. They need to be prepared to advocate for the special needs of older women who live with a long-term condition and remain cognizant of the women's resourcefulness and expertise developed over time.

The Flinders Program™ of chronic condition self-management in New Zealand: survey findings.

INTRODUCTION: The Flinders Program™ of Chronic Condition Self-Management in New Zealand (NZ) has been given focus as a useful and appropriate approach for self-management support and improvement of long-term condition management. AIM: To determine the use of the Flinders Program™ in NZ and identify barriers and enablers to its use. METHOD: A web-based survey was undertaken in June 2009 with 355 eligible participants of the 500 who had completed 'Flinders' training in NZ since 2005. RESULTS: 152 (43%) respondents completed the survey over a one-month time frame. Of those who responded, the majority were primary care nurses (80%; 118). Fifty-five percent (82) of survey respondents reported using some or all of the Flinders tools. Of these, 11% (16) reported using all of the tools or processes with 77% (104) of respondents having completed six or fewer client assessments utilising the Flinders tools. This indicates that respondents were relatively inexperienced with use of the Flinders Program™. Barriers to implementation were identified as the time needed for structured appointments (up to one hour), funding, resistance from colleagues, lack of space and insufficient ongoing support. DISCUSSION: Despite the extent of training in the use of the Flinders Program™, there is limited use in clinical practice of the tools and processes associated with the model. Without structured support for quality improvement initiatives and self-management programmes, the ability to implement learned skills and complex interventions is limited.

The feasibility of assessing the Flinders Program™ of patient self-management in New Zealand primary care settings.

INTRODUCTION: The Flinders Program™ has been adopted in New Zealand as a useful and appropriate approach for self-management with primary care clients who have chronic conditions. The Flinders Program™ has not been evaluated in New Zealand settings. AIM: To assess the feasibility of undertaking a substantive long-term trial to gauge the effectiveness of primary care nurses using the Flinders Program™ to improve health outcomes for New Zealand populations. METHODS: A pilot study was undertaken considering four components of feasibility of conducting a long-term trial: practice recruitment, participant recruitment, delivery of the intervention and outcome measures. This included comparing 27 intervention and 30 control patients with long-term health conditions with respect to change in self-management capacity-Partners in Health (PIH) scale-quality of care using the Patient Assessment of Chronic Illness Care (PACIC) scale and self-efficacy across six months. Intervention participants received care planning with practice nurses using the Flinders Program™ in general practices, while control participants received usual care in comparable practices. RESULTS: General practice and participant recruitment was challenging, together with a lack of organisational capacity and resources in general practice for the Flinders Program™. The measures of self-management capacity (PIH), quality of care (PACIC) and self-efficacy were useful and valuable primary outcome measures. DISCUSSION: The overall findings do not support a substantive trial of the Flinders Program™ in primary care. Difficulties associated with participant recruitment and ability of practice nurses to undertake the Flinders Program™ within general practice need to be resolved.

Women's experience of ageing with a chronic condition.

AIM: This paper is a report of a study to explore the experiences of 'almost old' women as they grow older while living with a chronic condition. BACKGROUND: Little is known about the contextual effects of ageing and how it shapes and is shaped by a woman's chronic illness experience. Nurses' understanding of this phenomenon can have positive effects on how their client accesses and responds to healthcare. METHOD: Seven women aged between 50 and 58 years participated in this interpretive descriptive study that explored the issues of ageing with a chronic condition. Three focus groups were held between March 2003 and March 2004. Transcriptions were analyzed after each focus group. Participants were given the opportunity to respond to the findings as the analysis progressed. FINDINGS: The experience of living with a chronic illness foreshadowed what was to come with ageing and embodied the ageing process: it was just part of their lives. Alongside this, the women now felt less out of place. Their peers were catching up and beginning to experience aspects of participants' everyday reality. The women, however, experienced double jeopardy because ageing amplified the ongoing vulnerabilities of living with a chronic condition. CONCLUSION: Nurses who recognize the resourcefulness and expertise of women who live with a chronic condition can effectively be co-strategists in their helping them to age well.