Family caregivers' views on coordination of care in Huntington's disease: a qualitative study

Røthing, Merete; Malterud, Kirsti; Frich, Jan C.

doi:10.1111/scs.12212

Cited by 24 publications

(29 citation statements)

References 34 publications

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“…In order to improve functioning and HRQoL of patients with HD, it is important that clinicians assess, record and monitor healthcare and social support service needs, as well as follow up that needs are met. Building partnerships with family caregivers may improve exchange of information and facilitate tailored health care delivery [41]. Our findings underline the importance of continuity of care through the whole disease spectrum (early to advanced HD) acknowledging the complex and changing nature of this disease [8, 9, 42].…”

Section: Discussionmentioning

confidence: 86%

Health-related quality of life and unmet healthcare needs in Huntington’s disease

Walsem

Howe

Ruud

et al. 2017

Health Qual Life Outcomes

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BackgroundHuntington’s disease (HD) is a rare neurodegenerative disorder with a prevalence of 6 per 100.000. Despite increasing research activity on HD, evidence on healthcare utilization, patients’ needs for healthcare services and Health-Related Quality of Life (HRQoL) is still sparse. The present study describes HRQoL in a Norwegian cohort of HD patients, and assesses associations between unmet healthcare and social support service needs and HRQoL.MethodsIn this cross-sectional population-based study, 84 patients with a clinical diagnosis of HD living in the South-East of Norway completed the HRQoL questionnaire EuroQol, EQ-5D-3L. Unmet needs for healthcare and social support services were assessed by the Needs and Provision Complexity Scale (NPCS). Furthermore, functional ability was determined using the Unified Huntington’s Disease Rating Scale (UHDRS) Functional assessment scales. Socio-demographics (age, gender, marital status, occupation, residence, housing situation) and clinical characteristics (disease duration, total functional capacity, comorbidity) were also recorded. Descriptive statistics were used to describe the patients’ HRQoL. Regression analyses were conducted in order to investigate the relationship between unmet healthcare needs and self-reported HRQoL.ResultsThe patients were divided across five disease stages as follows: Stage I: n = 12 (14%), Stage II: n = 22 (27%), Stage III: n = 19 (23%), Stage IV: n = 14 (16%), and Stage V: n = 17 (20%). Overall HRQoL was lowest in patients with advanced disease (Stages IV and V), while patients in the middle phase (Stage III) showed the most varied health profile for the five EQ-5D-3L dimensions. The regression model including level of unmet needs, clinical characteristics and demographics (age and education) accounted for 42% of variance in HRQoL. A higher level of unmet needs was associated with lower HRQoL (β value - 0.228; p = 0.018) whereas a better total functional capacity corresponded to higher HRQoL (β value 0.564; p < 0.001).ConclusionsThe study findings suggest that patients with HD do not receive healthcare services that could have a positive impact on their HRQoL.

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Section: Discussionmentioning

confidence: 86%

Health-related quality of life and unmet healthcare needs in Huntington’s disease

Walsem

Howe

Ruud

et al. 2017

Health Qual Life Outcomes

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“…Five studies explicitly describe the importance of professional recognition of the caregivers’ role (Kirk, ; Linderholm & Friedrichsen, ; Rapaport et al., ; Røthing et al., ; Wiles, ). Recognition is viewed to be paramount and a key principle underpinning good information‐sharing practice (Rapaport et al., ).…”

Section: Resultsmentioning

confidence: 99%

“…According to Røthing et al. (), caregivers for persons with Huntington's disease described the need for professionals to understand how the illness of the patient could affect the family. This expectation was not always met.…”

Section: Resultsmentioning

confidence: 99%

“…Two articles mentioned problems with communication (e.g. unclear information or miscommunication by the care recipient) as a barrier (Linderholm & Friedrichsen, ; Røthing et al., ). Wiles (), Toscan et al.…”

Section: Resultsmentioning

confidence: 99%

“…Four studies mentioned that roles and responsibilities between caregivers and professionals are sometimes unclear (Egdell, 2013;Linderholm & Friedrichsen, 2010;Røthing et al, 2015;Toscan et al, 2012). Unclear responsibilities made it difficult for the caregivers to know what was expected of them (Røthing et al, 2015). Linderholm and Friedrichsen (2010) Two studies underlined the importance of assessing the cultural context in understanding caregivers.…”

Section: Division Of Responsibilitiesmentioning

confidence: 99%

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Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

Wittenberg

Kwekkeboom

Staaks

et al. 2017

Health Soc Care Community

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This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

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Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review

et al. 2021

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Objective To understand contemporary genetic counseling and testing practices for late-onset neurodegenerative diseases (LONDs), and identify whether practices address the internationally accepted goals of genetic counseling: interpretation, counseling, education, and support. Methods Four databases were systematically searched for articles published from 2009 to 2020. Peer-reviewed research articles in English that reported research and clinical genetic counseling and testing practices for LONDs were included. A narrative synthesis was conducted to describe different practices and map genetic counseling activities to the goals. Risk of bias was assessed using the Qualsyst tool. The protocol was registered with PROSPERO (CRD42019121421). Results Sixty-one studies from 68 papers were included. Most papers focused on predictive testing (58/68) and Huntington’s disease (41/68). There was variation between papers in study design, study population, outcomes, interventions, and settings. Although there were commonalities, novel and inconsistent genetic counseling practices were identified. Eighteen papers addressed all four goals of genetic counseling. Conclusion Contemporary genetic counseling and testing practices for LONDs are varied and informed by regional differences and the presence of different health providers. A flexible, multidisciplinary, client- and family-centered care continues to emerge. As genetic testing becomes a routine part of care for patients (and their relatives), health providers must balance their limited time and resources with ensuring clients are safely and effectively counseled, and all four genetic counseling goals are addressed. Areas of further research include diagnostic and reproductive genetic counseling/testing practices, evaluations of novel approaches to care, and the role and use of different health providers in practice. Supplementary Information The online version contains supplementary material available at 10.1007/s00415-021-10461-5.

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Family caregivers' views on coordination of care in Huntington's disease: a qualitative study

Cited by 24 publications

References 34 publications

Health-related quality of life and unmet healthcare needs in Huntington’s disease

Health-related quality of life and unmet healthcare needs in Huntington’s disease

Informal caregivers’ views on the division of responsibilities between themselves and professionals: A scoping review

Genetic counseling and testing practices for late-onset neurodegenerative disease: a systematic review

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