Families’ priorities in life-limiting illness: improving quality with online empowerment

ObjectiveImproving quality of life (QOL) is the central focus of palliative care support for children with life-limiting illness (LLI), but achieving this can be challenging.InterventionMyQuality is an online tool that enables families to choose and monitor parameters they identify as having an impact on their QOL, which aims to improve patient–professional communications and also to enhance patient empowerment within healthcare dialogues.DesignA longitudinal, multisite mixed-method evaluation of MyQuality. Families were invited to use MyQuality and completed semi-structured interviews and a Family Empowerment Scale (FES) at T=0 and T+3 months.Patients and settingThirty-two families of children with LLIs, attending three children's hospices in one UK region.Outcome measuresWebsite access, usage patterns and parameter choice, FES scores and qualitative evaluation of interviews.Results23/32 families chose to use the website. Mean duration of use was 106 days (range 2–301), with families choosing two or three parameters (range 1–15), most commonly seizures (24/32), constipation (9/32), pain (6/32) and sleep problems (6/32). Mean FES scores increased over time (3.45–3.85). Interview feedback confirmed the acceptability and ease of use of the website, and the value of a graphic record of change over time to support ongoing management and collaborative review of medical, nursing or social interventions.ConclusionsThe identification and monitoring of patient-generated priorities via the MyQuality website empowers families and supports collaboration between parents and professionals to ensure that palliative care is truly patient and family centred.

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Assisted Living Administrators' Views of Palliative Care

Innovation in Aging ◽

10.1093/geroni/igab046.3259 ◽

2021 ◽

Vol 5 (Supplement_1) ◽

pp. 906-906

Author(s):

Elise Abken ◽

Molly Perkins ◽

Alexis Bender

Keyword(s):

Quality Of Life ◽

Palliative Care ◽

Assisted Living ◽

Spiritual Needs ◽

Structured Interviews ◽

Age In Place ◽

Care Access ◽

Access And Quality ◽

Using Data

Abstract As many older adults with progressive chronic conditions choose to age-in-place in assisted living (AL) communities, external healthcare workers (e.g., those who provide palliative care) increasingly support AL staff in caring for residents with complex health needs. Palliative care is a branch of healthcare dedicated to preserving quality of life by attending to the physical, mental, and spiritual needs of individuals with chronic, life-threatening diseases and is well suited to manage AL residents’ progressive medical conditions. However, AL residents and their care partners often face barriers to accessing palliative care. Using data from a larger 5-year NIA-funded study, we examined AL administrator knowledge and use of palliative care in seven AL communities around the Atlanta metropolitan area that were racially, ethnically, and socioeconomically diverse. Findings from thematic analysis of semi-structured interviews with 16 administrators indicated that 15 of 16 administrators were familiar with palliative care. A minority of administrators clearly distinguished palliative care from hospice services and conceptualized it as a “bridge” to hospice services. Administrators emphasized how palliative care assists communities in caring for health concerns in-house rather than having to send residents to the hospital. Despite their positive view of palliative care, administrators described infrequent use of palliative services in their communities. Findings show that although none of the AL communities integrate palliative care with their service offerings, AL administrators see value in palliative care for their residents. We provide recommendations for improving palliative care access and quality of life for AL residents at end of life.

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Prospective cohort study of patients with advanced cancer and their relatives on the experienced quality of care and life (eQuiPe study): a study protocol

BMC Palliative Care ◽

10.1186/s12904-020-00642-w ◽

2020 ◽

Vol 19 (1) ◽

Author(s):

Janneke van Roij ◽

◽

Myrte Zijlstra ◽

Laurien Ham ◽

Linda Brom ◽

...

Keyword(s):

Palliative Care ◽

Cohort Study ◽

Quality Of Care ◽

The Netherlands ◽

Advanced Cancer ◽

Number Of Patients ◽

Changes Over Time ◽

Prospective Longitudinal ◽

Over Time

Abstract Background Palliative care is becoming increasingly important because the number of patients with an incurable disease is growing and their survival is improving. Previous research tells us that early palliative care has the potential to improve quality of life (QoL) in patients with advanced cancer and their relatives. According to limited research on palliative care in the Netherlands, patients with advanced cancer and their relatives find current palliative care suboptimal. The aim of the eQuiPe study is to understand the experienced quality of care (QoC) and QoL of patients with advanced cancer and their relatives to further improve palliative care. Methods A prospective longitudinal observational cohort study is conducted among patients with advanced cancer and their relatives. Patients and relatives receive a questionnaire every 3 months regarding experienced QoC and QoL during the palliative trajectory. Bereaved relatives receive a final questionnaire 3 to 6 months after the patients’ death. Data from questionnaires are linked with detailed clinical data from the Netherlands Cancer Registry (NCR). By means of descriptive statistics we will examine the experienced QoC and QoL in our study population. Differences between subgroups and changes over time will be assessed while adjusting for confounding factors. Discussion This study will be the first to prospectively and longitudinally explore experienced QoC and QoL in patients with advanced cancer and their relatives simultaneously. This study will provide us with population-based information in patients with advanced cancer and their relatives including changes over time. Results from the study will inform us on how to further improve palliative care. Trial registration Trial NL6408 (NTR6584). Registered in Netherlands Trial Register on June 30, 2017.

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Assessing and referring adolescents' health-related social problems: qualitative evaluation of a novel web-based approach

Journal of Telemedicine and Telecare ◽

10.1258/jtt.2012.120214 ◽

2012 ◽

Vol 18 (7) ◽

pp. 392-398 ◽

Cited By ~ 19

Author(s):

Sarah A Wylie ◽

Areej Hassan ◽

Emily G Krull ◽

Aaron B Pikcilingis ◽

Heather L Corliss ◽

...

Keyword(s):

Young Adults ◽

Social Problems ◽

Qualitative Evaluation ◽

Ease Of Use ◽

Structured Interviews ◽

Screening Process ◽

Staff Support ◽

Web Based ◽

Health Related ◽

Computerized Screening

We conducted a qualitative study to examine users' perceptions of a web-based screening and referral system for young adults with health-related social problems. The first 50 patients who used the system also took part in semi-structured interviews. There were 20 patients aged 15–17 years and 30 aged 18–25 years. Completing the web-based screening process took an average of 25 min. Ninety percent of participants reported at least one major health-related social problem and a total of 134 referrals were selected for further assistance. Ninety-six percent of participants said they would recommend the system to a friend or peer, and 80% supported its use for annual screening. Perceived strengths of the system were novelty, privacy, ease of use, relevance, motivation, variety and proximity of referrals, and clinic staff support. Perceived shortcomings were length, sensitivity, navigation challenges and agency availability. The system complemented provider visits and preserved privacy while improving attention to patient needs. Computerized screening and referral tools have potential to improve the quality of care in vulnerable young adults.

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Audiobooks from terminally ill parent for their children – a qualitative evaluation

10.21203/rs.3.rs-290116/v1 ◽

2021 ◽

Author(s):

Henning Cuhls ◽

Michaela Hesse ◽

Gülay Ates ◽

Lukas Radbruch

Keyword(s):

Palliative Care ◽

Young Children ◽

Terminally Ill ◽

Qualitative Evaluation ◽

Life Review ◽

Main Theme ◽

Young Parents ◽

Dignity Therapy ◽

Limited Life

Abstract Background Improving the quality of life is one of the main objectives of palliative care. Biographical approaches are often used in combination with leaving a legacy in a range of different interventions such as Dignity Therapy or Life Review. This study presents an evaluation of audiobook biographies for palliative care patients with young children. Methods Young parents diagnosed with a life-limiting disease could participate and create an audiobook for their young children. The audiobook itself was recorded over several days and edited by qualified radio journalists. After providing informed consent participants were interviewed twice over the course of the intervention regarding expectations, concerns, motivation, and experiences. Interviews and notes were transcribed verbatim and were analyzed using content analysis. Results The data were collected from February 2017 till September 2020. Fifty-four patients with ninety-six children at a mean age of seven years were included and created an audiobook. The main theme of all interviews were the children. Within this field identified main topics were legacy, motivation, usage, benefit, aims, difficulties and worries in descending order. All patients would recommend the intervention.Conclusion Creating an audiobook as a legacy to their children seemed to help the diseased parents to cope with their limited life span.

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“Tipping The Balance” – An Evaluation of COVID-19 Parenting Resources Developed and Adapted for Child Protection During Global Emergency Responses

10.21203/rs.3.rs-1031743/v1 ◽

2021 ◽

Author(s):

Lorraine Sherr ◽

Helen Mebrahtu ◽

Kasonde Mwaba ◽

Nisso Nurova ◽

Angelique Nicole Chetty ◽

...

Keyword(s):

Child Protection ◽

Qualitative Evaluation ◽

Ease Of Use ◽

School Closure ◽

Local Context ◽

Evidence Based ◽

Structured Interviews ◽

Children’S Behaviour ◽

Future Direction ◽

The Impact

Abstract Background: The advent of the COVID-19 pandemic presented many challenges for parenting. Parenting was severely affected by lockdown, school closure, illness, shortages, movement restrictions and the many sudden changes wrought by the global emergence of COVID-19. Responding to the need for a rapid emergency response to support parents and caregivers, a consortium of providers developed a suite of COVID-19 parenting resources based on evidence-based parenting interventions. Launched in March 2020, these were adapted for online use, with versions in over 100 languages, and the possibility for downloading, radio, and oral provision. A rapid qualitative evaluation initiative was conducted from September 2020 to February 2021 to inform the procedure, understand the impact and to drive future provision.Methods: The evaluation collected open-ended responses surveys (n=495 participants) and in-depth interviews with parents, providers and adolescent children (n=22) from 14 countries and one global source. Data were gathered on parenting challenges during COVID-19 and the utility of the COVID-19 parenting resources. In-depth, semi-structured interviews explored the same concepts and elaborating on challenges, utility, and recommendations for the future. Data were translated to English and coded in a hierarchy from basic, organising and global theme generation. Results: The parenting resources equipped parents with information and practices transforming everyday lives, interactions and the challenges from the parenting pressures. The tips provided prompts and permissions related to children’s behaviour, enabled communications and offered ways to reduce stress, monitor behaviour and navigate discipline challenges. The timeliness of the resources as well as the clarity and ease of use were seen as advantages. Future direction and possible hurdles related to adaptations needed according to recipient, child age, local context, culture and new challenges. Conclusions: Although limited by the timing and reach of the disseminated tips, overall findings point to the value and utility of this unprecedented global response to the COVID-19 pandemic. Results suggest that rapid provision of parenting resources at scale is feasible and of use and opens up a pathway for providing evidence-based interventions under COVID-19 constraints.Trial registration: N/A

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CUIDADOS PALIATIVOS: VISÃO DE ENFERMEIROS DE UM HOSPITAL DE ENSINO

Enfermagem em Foco ◽

10.21675/2357-707x.2016.v7.n1.661 ◽

2016 ◽

Vol 7 (1) ◽

pp. 28-32

Author(s):

Mariana Carneiro De Oliveira ◽

Francine Lima Gelbcke ◽

Luciana Martins Da Rosa ◽

Mara Ambrosina De Oliveira Vargas ◽

Juliana Balbinot Girondi Reis

Keyword(s):

Palliative Care ◽

Chronic Disease ◽

World Health ◽

Structured Interviews ◽

Team Members ◽

Clinical Unit ◽

Calidad De Vida ◽

Philosophy Of Palliative Care ◽

Health Organization

Objetivo: identificar se há a inserção do conceito e dos princípios dos Cuidados Paliativos definidos pela Organização Mundial de Saúde na atuação de enfermeiros de Unidades de Clínicas Médicas e da Comissão de Cuidados Paliativos e Controle da Dor de um Hospital- Escola da Região Sul do Brasil. Metodologia: pesquisa qualitativa com coleta de dados mediante entrevista semiestruturada com 22 enfermeiros, submetidas à técnica de análise de conteúdo. Resultados: o enfermeiro vincula os Cuidados Paliativos com o processo de morte dos pacientes. A comunicação limitada oblitera as condutas tomadas pelos membros da equipe. As pessoas com doença crônica são encaminhadas tardiamente, submetendo-se a ações reducionistas que não proporcionam qualidade de vida. Conclusões: os princípios da filosofia dos Cuidados Paliativos estão inseridos parcialmente na prática dos profissionais. Há demanda de formação acadêmica e em serviço.Descritores: Cuidados Paliativos, Doença Crônica, Cuidados de Enfermagem, Serviço Hospitalar de Enfermagem.PALLIATIVE CARE: NURSES VISION OF A TEACHING HOSPITALObjective: identify if there is the inclusion of the concept and the principles of palliative care as defined by the World Health Organization in the performance of Medical Clinical Unit nurses and the Committee on Palliative Care and Pain Management of a teaching hospital in southern Brazil. Methodology: qualitative research with data collection through semi-structured interviews with 22 nurses, submitted to the technique of content analysis. Results: the nurse links Palliative Care of death of patients process. The limited communication obliterates the steps taken by team members. People with chronic disease are referred late, undergoing reductionist actions that do not provide quality of life. Conclusion: the principles of the philosophy of palliative care are partially inserted in professional practice. There is demand for academic training and service.Descriptors: Palliative Care, Chronic Disease, Nursing Care, Nursing Service Hospital.CUIDADOS PALIATIVOS: VISIÓN DE ENFERMEROS DE UN HOSPITAL UNIVERSITARIOObjetivo: identificar si existe la inclusión del concepto y los principios de los cuidados paliativos según lo definido por la Organización Mundial de la Salud en el desempeño de médicos enfermeras Clinical Unit y el Comité de Cuidados Paliativos y Tratamiento del Dolor de un hospital universitario en el sur de Brasil. Metodología: la investigación cualitativa con la recolección de datos a través de entrevistas semiestructuradas con 22 enfermeras, sometidos a la técnica de análisis de contenido. Resultados: la enfermera une cuidados paliativos de la muerte del proceso de los pacientes. La comunicación limitada borra las medidas adoptadas por los miembros del equipo. Las personas con enfermedades crónicas se refieren tarde, sometidos a acciones reduccionistas que no proporcionan la calidad de vida. Conclusións: los principios de la filosofía de los cuidados paliativos se insertan parcialmente en la práctica profesional. Hay demanda de formación académica y de servicio.Descriptores: Cuidados Paliativos, Enfermedad Crónica, Atención de Enfermería, Servicio de Enfermería en Hospital.

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Presence and the paradox of time for palliative care clinicians: a phenomenological study

International Journal of Whole Person Care ◽

10.26443/ijwpc.v7i2.238 ◽

2020 ◽

Vol 7 (2) ◽

pp. 13-25

Author(s):

Melanie Vachon ◽

Christine Goyette ◽

Alexandra Guité-Verret

Keyword(s):

Palliative Care ◽

Phenomenological Study ◽

Working Environment ◽

Structured Interviews ◽

High Quality ◽

Promising Tool ◽

Organizational Demands ◽

Competing Demands ◽

Life Journey

Background: A presence of quality is recognized as a central competence for palliative care clinicians in their mission to accompany patients and families in their end-of-life journey. However, PC clinicians’ capacity for presence may be affected by the increasing emotional, professional and organizational demands of their working environment. Those demands may, in turn, affect quality of care and clinicians’ health. To our knowledge, no previous study has aimed at a better understanding of how PC clinicians view and experience presence in their day-to-day work, although this holds the potential of generating insights to help clinicians develop and cultivate a high-quality presence towards dying patients.Methods: We conducted in-depth qualitative semi-structured interviews with 10 PC clinicians working on a specialized PC ward, later analyzed using Interpretative Phenomenological Analysis.Results: Results account for three essential themes describing the experience of presence; connection to the self, to the other and to the meaning of care. Results also suggest that presence was lived and experienced within a very particular relation to time, which appeared to our participants as a significant challenge in achieving high-quality presence.Conclusion: The stressful working environment in which PC clinicians daily evolve appeared as a threat to presence for our participants. Paradoxically, cultivating presence with mindfulness may be a promising tool to better cope with the competing demands of work and to foster clinicians’ resilience to stress.

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Staff Perceptions of How Music Therapy Can Support Palliative Care Patients in a New Zealand / Aotearoa Hospice, with a Particular Focus on Spiritual Care

10.26686/wgtn.16993036 ◽

2021 ◽

Author(s):

◽

Keryn Squires

Keyword(s):

Palliative Care ◽

New Zealand ◽

Music Therapy ◽

Narrative Analysis ◽

Spiritual Care ◽

Team Work ◽

Spiritual Needs ◽

Structured Interviews ◽

Dying Patients ◽

Over Time

<p>The purpose of this study was to explore the perceptions of staff from a hospice, in New Zealand / Aotearoa, regarding the use of music therapy in the care of dying patients. The study has a particular focus on spiritual aspects of palliative care in music therapy, as spirituality is an inherent aspect of the work done by caregivers in palliative care. Hospice staff were asked to reflect on what they knew and understood of music therapy before, and after, a music therapy student arrived at the hospice, and their narratives were explored to uncover the links between patients, music and spirituality. The aim of this was to identify what might be needed to increase knowledge, to improve referral processes, and to increase opportunities for collaborative team work. A cross-section of staff, i.e. two nurses, one doctor, an occupational therapist, and a counsellor, who were part of the palliative care team, were recruited to participate in two semi-structured interviews to discuss their perceptions of the potential for music therapy to support the spiritual needs of hospice patients. A qualitative approach was employed and narrative analysis was used to interpret the interviews. Narrative research emphasises the language of human understanding and in this research it involved gathering participants' 'stories' of their evolving perceptions over time. Findings suggest the language used to describe spiritual care in music therapy was different for each participant although common meanings were drawn from the participants' stories. Commonalities included: music therapy in the hospice was valued by the participants; some participants would like more knowledge to make an informed referral. In addition, staff understanding appeared to have increased over time partly due to educational seminars, sharing at team meetings, actual exposure to music therapy, informal conversations with staff, and participants' growing knowledge of music therapy through their own personal process of learning.</p>

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Longitudinal assessment of the health-related quality of life among older people with diabetes: results of a nationwide study in New Zealand

10.21203/rs.2.16805/v3 ◽

2020 ◽

Author(s):

Seyed Morteza Shamshirgaran ◽

Christine Stephens ◽

Fiona Alpass ◽

Nayyereh Aminisani

Keyword(s):

Quality Of Life ◽

Older Adults ◽

New Zealand ◽

Sleep Problems ◽

Health Related Quality ◽

Related Quality ◽

Health Related ◽

Mental Hrqol ◽

Over Time

Abstract Background: The current work examined experiences of Health Related Quality of Life (HRQOL) among older adults with a diagnosis of Diabetes Mellitus (DM) over time compared to those without a diagnoses DM. Methods: The sample was drawn from six biennial waves of the New Zealand Health, Work and Retirement survey, a prospective population-based cohort study of older adults 55-70 years at baseline. Data on sociodemographic factors, health behaviours, chronic disease diagnoses and physical and mental HRQOL (SF-12v2) were obtained using six biennial surveys administered 2006-2016. Generalised Estimating Equation models, adjusted for time-constant and -varying factors, were employed to compare HRQOL and its determinants over time for older adults with and without a diagnosis of DM. Results: DM was negatively associated with physical HRQOL [β (95% CI) −7.43 (−8.41, −6.44)] with older adults affected by DM reporting scores 7.4 points lower than those without DM. Similarly, the mean Mental HRQOL score was lower among those affected by DM [β = −4.97 (−5.93, −4.01)] however, scores increased over time for both groups ( p <0.001). Greater age, more chronic conditions, sight and sleep problems, obesity, lower annual income, and fewer years of education were predictors of poorer HRQOL among older adults. Conclusions: Older adults affected by diabetes experienced poorer physical and mental HRQOL compared to those not affected when controlling for a range of sociodemographic and health related indices. A management aim must be to minimise the gap between two groups, particularly as people age.

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