‘I don’t think I’d be frightened if the statins went’: a phenomenological qualitative study exploring medicines use in palliative care patients, carers and healthcare professionals

Background

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

Bridging the Gap: Developing a Palliative Approach to Care for Young Adults with Life Limiting Conditions

More young adults (YAs) with life limiting conditions (LLC) are surviving into adulthood as earlier diagnosis and improved medical management in pediatric care lead to higher rates of survival for cancer, congenital heart and neuromuscular conditions. When these YAs leave pediatric care, they leave behind comprehensive and coordinated health, social and education services for uncoordinated adult systems, with limited access to palliative services they received in pediatric care.

YAs with LLCs will benefit from a public health palliative approach to care. This approach better matches their chronic disease trajectories of a series of declining plateaus over a period of months to years, punctuated by unpredictable periodic crises. Public health palliative care is a blended provision of health care and community services based on evidence that health care is most effective and least expensive when offered in conjunction with a complement of services that reflects social determinants of health and well-being. For YAs with LLCs, these resources will support their health, social, vocational, independent living, and educational goals to maximize their opportunities in an abbreviated time frame.


The objectives of this workshop are to:

1. Provide an overview of the young adult population with palliative care needs.
2. Discuss current care of this population.
3. Highlight results from three recent projects to examine and address needs of this population.
4. Dialogue with audience about other programs, initiatives, or ideas to address the needs of this population.

We look forward to robust conversations and ideas from your practice and research.

Predictors of caregiver burden across the home-based palliative care trajectory in Ontario, Canada

Family caregivers of patients enrolled in home-based palliative care programmes provide unpaid care and assistance with daily activities to terminally ill family members. Caregivers often experience caregiver burden, which is an important predictor of anxiety and depression that can extend into bereavement. We conducted a longitudinal, prospective cohort study to comprehensively assess modifiable and non-modifiable patient and caregiver factors that account for caregiver burden over the palliative care trajectory. Caregivers (n = 327) of patients with malignant neoplasm were recruited from two dedicated home-based palliative care programmes in Southern Ontario, Canada from 1 July 2010 to 31 August 2012. Data were obtained from bi-weekly telephone interviews with caregivers from study admission until death, and from palliative care programme and home-care agency databases. Information collected comprised patient and caregiver demographics, utilisation of privately and publicly financed resources, patient clinical status and caregiver burden. The average age of the caregivers was 59.0 years (SD: 13.2), and almost 70% were female. Caregiver burden increased over time in a non-linear fashion from study admission to patient death. Increased monthly unpaid care-giving time costs, monthly public personal support worker costs, emergency department visits and low patient functional status were associated with higher caregiver burden. Greater use of hospice care was associated with lower burden. Female caregivers tended to report more burden compared to men as death approached, and burden was higher when patients were male. Low patient functional status was the strongest predictor of burden. Understanding the influence of modifiable and non-modifiable factors on the experience of burden over the palliative trajectory is essential for the development and targeting of programmes and policies to support family caregivers and reduce burden. Supporting caregivers can have benefits such as improved caregiver health outcomes, and enhancing their ability to meet care-giving demands, thereby potentially allowing for longer patient care in the home setting.

Renal palliative care – where to after the PACKS study?

The PAlliative Care in chronic Kidney diSease study (PACKS study) is examining quality of life, decision making and decisional conflict, costs and mortality in patients with advanced chronic kidney disease who have opted for palliative care. It is also exploring the impact of the decision on the quality of life of carers. The study includes adult patients with end stage (stage 5) chronic kidney disease who have opted for palliative care, adult carers of these patients and renal physicians/clinical nurse specialists who have experience of treating patients with end stage chronic kidney disease who have opted for palliative care.
Early initial findings relate to clinician perspectives on patient decisional conflict, in making complex decisions between dialysis and conservative management. Interviews were conducted with nephrologists and clinical nurse specialists across 10 renal centres in the UK. Themes with associated subthemes include “Frequent changing of mind regarding treatment options,” “A paternalistic approach to decision-making and “Intricacy of the decision”. These findings will be presented and recommendations for future research and education made. Clinicians need to take a more patient centered approach to decision-making. Interventions aimed at increasing understanding of renal disease and its treatments may reduce decisional conflict and raise decisional quality but require testing in the renal specialty.

UK consensus project on quality in palliative day services: developing a quality indicator set using the RAND/UCLA appropriateness method

Introduction
Evaluating quality of palliative day services is essential for assessing care across diverse settings, and for monitoring quality improvement approaches.

Aim
To develop a set of quality indicators for assessment of all aspects (structure, process and outcome) of care in palliative day services.

Methods
Using a modified version of the RAND/UCLA appropriateness method (Fitch et al., 2001), a multidisciplinary panel of 16 experts independently completed a survey rating the appropriateness of 182 potential quality indicators previously identified during a systematic evidence review. Panel members then attended a one day, face-to-face meeting where indicators were discussed and subsequently re-rated. Panel members were also asked to rate the feasibility and necessity of measuring each indicator.

Results
71 indicators classified as inappropriate during the survey were removed based on median appropriateness ratings and level of agreement. Following the panel discussions, a further 60 were removed based on appropriateness and feasibility ratings, level of agreement and assessment of necessity. Themes identified during the panel discussion and findings of the evidence review were used to translate the remaining 51 indicators into a final set of 27.

Conclusion
The final indicator set included information on rationale and supporting evidence, methods of assessment, risk adjustment, and recommended performance levels. Further implementation work will test the suitability of this ‘toolkit’ for measurement and benchmarking. The final indicator set provides the basis for standardised assessment of quality across services, including care delivered in community and primary care settings.

Reference

• Fitch K, Bernstein SJ, Aguilar MD, et al. The RAND/UCLA Appropriateness Method User’s Manual. Santa Monica, CA: RAND Corporation; 2001. http://www.rand.org/pubs/monograph_reports/MR1269

From pregnancy to palliative care: advancing professional midwifery practice?

Historically midwives may have not considered palliative care as a part of their professional role. Enhanced technologies and antenatal screening have broadened the boundaries of care. However do midwives truly embrace the philosophy of palliative care into their practice? This paper presents the discussion round a case study that demonstrates the evolving area of advanced practice: perinatal palliative care. What we highlight is that midwives in fact have an important collaborative role to play in ensuring that palliative care for the baby and family starts as soon as a life-limiting condition is recognised, thus ensuring best care and support are provided for those parents and families for whom pregnancy sadly leads to palliative care. Five key lessons for practice are outlined.

Music therapy for palliative care: A realist review

Music therapy has experienced a rising demand as an adjunct therapy for symptom management among palliative care patients. We conducted a realist review of the literature to develop a greater understanding of how music therapy might benefit palliative care patients and the contextual mechanisms that promote or inhibit its successful implementation.
We searched electronic databases (CINAHL, Embase, Medline, and PsychINFO) for literature containing information on music therapy for palliative care. In keeping with the realist approach, we examined all relevant literature to develop theories that could explain how music therapy works.
A total of 51 articles were included in the review. Music therapy was found to have a therapeutic effect on the physical, psychological, emotional, and spiritual suffering of palliative care patients. We also identified program mechanisms that help explain music therapy's therapeutic effects, along with facilitating contexts for implementation.
Music therapy may be an effective nonpharmacological approach to managing distressing symptoms in palliative care patients. The findings also suggest that group music therapy may be a cost-efficient and effective way to support staff caring for palliative care patients. We encourage others to continue developing the evidence base in order to expand our understanding of how music therapy works, with the aim of informing and improving the provision of music therapy for palliative care patients.

Vuxna ADHD patienters upplevelse av delaktighet och behov av sjuksköterskans stöd vid behandling inom öppenvårdspsykiatrin En kvalitativ intervjustudie

Bakgrund: Många vuxna med ADHD avbryter sin behandling av okända orsaker. Därför är det viktigt att undersöka hur vuxna med ADHD upplever sina möjligheter att vara delaktiga i behandlingen och på vilket sätt sjuksköterskan kan vara till stöd för dem. Syfte: Att beskriva vuxna ADHD patienters upplevelse av delaktighet och behov av sjuksköterskans stöd vid behandling inom öppenvårdspsykiatrin. Metod: Kvalitativ studie som baseras på åtta semistrukturerade intervjuer. Intervjumaterialet analyserades med innehållsanalys. Resultat: Många upplevde att de saknade information om diagnos och behandling och att de därför inte kunde vara med och påverka. Sjuksköterskan upplevdes vara lättare att nå än läkaren och kunde erbjuda tätare uppföljningar. Sjuksköterskan upplevdes också ha en samordnande funktion mellan olika yrkeskategorier. Att bli sedd som person och inte bli reducerad till en patient med ADHD var viktigt. Slutligen framkom betydelsen av att även involvera närstående i behandlingen. Slutsats: En del av sjuksköterskans arbete är att föra ut kunskap och information till patienterna på ett sätt som patienterna förstår utifrån varje persons specifika behov för att öka patienternas möjlighet till delaktighet. Specialistsjuksköterskan kan också utgöra ett stöd genom möjligheten att erbjuda tätare kontakt och mer uppföljning, samordning med andra yrkesgrupper och samhällsinstanser. Stöd kan också handla om att se människan bakom diagnosen.

Vi vill, vi kan men hur? : Att använda sig av anpassade verktyg för cheferna inom vård och omsorg för att förmedla sitt ledarskap till sina medarbetare

Vårt syfte med denna studie är att belysa de verktyg som kan erfordras för att enhetschefer ska kunna förmedla sitt ledarskap till sina medarbetare. Detta på grund av att medarbetarna inom kommunen inte är helt belåtna med ledarskapet från kommun eller sina chefer, vilket framgår i den medarbetarundersökning som genomfördes 2014 av kommunen. I samma medarbetarundersökning framkom det likaså att sjukskrivningar bland medarbetarna i kommunen kan beror på ledarskapet. Därför har vi valt att undersöka en del av kommunens enhetschefer och hur de ser på sitt eget ledarskap samt vad de kan göra för att få sina medarbetare att må bättre och förebygga sjukskrivningar. Då tiden inte fanns till att undersöka alla enhetschefer inom den valda kommunen, valdes vård och omsorgsförvaltningens enhetschefer ut för vår egen enkätundersökning. Resultatet av vår enkätundersökning utföll sig på så sätt att enhetscheferna erfordrar mer tid att ägna sig åt sina medarbetare och att administrativt stöd fordras för att underlätta enhetschefernas arbetsmiljö. Om enhetscheferna erhåller mer tid till att spendera med sina medarbetare kan det skapa ett starkare psykologiskt band emellan dem, vilket gör att tilliten från medarbetarna till enhetscheferna stärks. När tilliten stärks vågar medarbetarna vända sig till sina enhetschefer för att berätta hur de mår. Genom att plocka bort de administrativa uppgifterna och i stället ge dem till en assistent får enhetscheferna mer tid till att spendera med sin personal och utifrån detta kan de eventuellt få en översikt av hur verksamheten fungerar. Översikten gör att de kan fatta bättre strategiska beslut för deras verksamhet och medarbetare.

Recension av Andkjær, Søren, Bentsen, Peter & Ejbye-Ernst, Niels (2009) ”Friluftsliv: Natur, samfund og pædagogik” : Ambitiöst om friluftsliv i Danmark – kanske alltför ambitiöst...

Friluftsliv uppvisar ett uppsving som för många säkert är oväntat men som nog till stor del är i samklang med den skandinaviska tidsandan. Visserligen är det ett i huvudsak urbant fenomen, de senaste årens fokus på fysisk aktivitet, konditionsträning och fitness, aktiviteter som dessutom ofta äger rum inomhus i speciella kommersiellt drivna träningshallar – där är luften inte fri! – men trenden tar sig också uttryck i löpning eller joggning i urbana parkområden eller i lagom tuktad natur i anslutning till städer. Man kan tänka att steget inte skulle vara långt till verkliga naturupplevelser, och, som sagt, det finns ett uppsving. Det nymornade intresset för autentiska naturupplevelser kan säkert också bottna i en civilisationskritisk trend i det tidiga tredje millenniet, vars beståndsdelar spretar på ett sätt som gör det omöjligt att närmare skärskåda företeelsen i detta sammanhang. Istället konstaterar vi att forskningen varit kvick att fånga upp friluftsintresset, vilket inte minst märks i recensionsfloran på den här webbplatsen, som denna gång utvidgas med en recension av Friluftsliv: Natur, samfund og pædagogik av Peter Bentsen, Søren Andkjær och Niels Ejbye-Ernst (Munksgaard Danmark). Erik Backman, som disputerat i ämnet, har läst och recenserar, och han bjuder redaktörerna på många tips till förbättringar inför nästa upplaga av boken.