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  • 1
    Online Resource
    Online Resource
    Specialized outpatient palliative care for children, adolescents, and their families—the special needs of the target group. Results of the ELSAH study
    Springer Science and Business Media LLC ; 2022
    In:  Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz Vol. 65, No. 3 ( 2022-03), p. 357-366
    Details
    In: Bundesgesundheitsblatt - Gesundheitsforschung - Gesundheitsschutz, Springer Science and Business Media LLC, Vol. 65, No. 3 ( 2022-03), p. 357-366
    Abstract: Children and adolescents with life-limiting conditions and complex symptoms are eligible for specialized outpatient palliative care (SOPC). The SOPC guideline in Germany solely states: “The special needs of children and adolescents shall be considered.” This study aims to identify these special needs and to develop recommendations for a revision of the SOPC guideline. Methods We used a sequential mixed-methods design including surveys, qualitative interviews, participant observations, and focus group discussions with relatives, patients, and team members of the SOPC in Hesse, Germany. Furthermore, we analyzed documentation data of the Hessian SOPC teams. Results Children and adolescents in SOPC suffer from complex and often rare diseases. They need elaborate palliative care delivered by a team with pediatric expertise. SOPC must include the whole family and coordinate healthcare providers that are stretched regionally. Furthermore, patients and relatives need elaborate psychosocial care. SOPC for children and adolescents is less well-known than SOPC for adults, and access for families is often difficult. There is a healthcare gap for children and adolescents with life-limiting diseases who need palliative care at home but not of the intensive kind provided by SOPC. Conclusions SOPC for children, adolescents, and adults who have been diseased since their childhood and adolescence must be delivered within an independent structure, including a reimbursement scheme that takes the special care efforts for this patient group into consideration.
    Type of Medium: Online Resource
    ISSN: 1436-9990 , 1437-1588
    URL: Article
    DOI: 10.1007/s00103-022-03500-7
    Language: German
    Publisher: Springer Science and Business Media LLC
    Publication Date: 2022
    detail.hit.zdb_id: 1470303-8
    SSG: 20,1
    SSG: 8,1
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    Online Resource
  • 2
    Online Resource
    Online Resource
    Care practices of specialized outpatient pediatric palliative care teams in collaboration with parents: Results of participatory observations
    SAGE Publications ; 2022
    In:  Palliative Medicine Vol. 36, No. 2 ( 2022-02), p. 386-394
    Details
    In: Palliative Medicine, SAGE Publications, Vol. 36, No. 2 ( 2022-02), p. 386-394
    Abstract: Collaboration between parents and professional care providers is an essential part of pediatric palliative care. As children are embedded in family systems and many of the patients are not able to communicate verbally, their parents are the primary interaction partners for palliative care providers. International standards for pediatric palliative care in Europe state that parents should be supported, acknowledged as the primary carers and involved as partners in all care and decisions. Aim: To find out through which care practices pediatric palliative care teams shape collaboration with parents in everyday care. Design: Ethnographic method of participatory observations. Field notes were analyzed using thematic analysis. Setting/participants: Researchers accompanied three pediatric palliative care teams on home visits to eight different families caring for a child with life-limiting conditions. Results: Care practices of palliative care teams were characterized by familiarity, a resource-oriented attitude, empowerment of parents, shared decision-making and support for parents. Palliative care teams not only provided palliative medical treatment for the children, but also developed a trusting care partnership with parents. The teams employed a sensitive and multifaceted communication style in their collaboration with parents. Conclusions: Care practices in pediatric palliative care require time, communication skills, and a high level of psychosocial competence, to develop a trusting, collaborative relationship with parents. This should be taken into consideration when establishing pediatric palliative care structures, preparing guidelines, training staff, and deciding upon appropriate remuneration.
    Type of Medium: Online Resource
    ISSN: 0269-2163 , 1477-030X
    URL: Article
    DOI: 10.1177/02692163211065294
    Language: English
    Publisher: SAGE Publications
    Publication Date: 2022
    detail.hit.zdb_id: 2027566-3
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  • 3
    Online Resource
    Online Resource
    Specialised outpatient paediatric palliative care team–parent collaboration: narrative interviews with parents
    BMJ ; 2022
    In:  BMJ Supportive & Palliative Care Vol. 12, No. e5 ( 2022-11), p. e664-e670
    Details
    In: BMJ Supportive & Palliative Care, BMJ, Vol. 12, No. e5 ( 2022-11), p. e664-e670
    Abstract: In Germany, children with life-limiting conditions and complex symptoms are eligible for specialised outpatient palliative care (SOPC). In the federal state of Hesse, SOPC for children (SOPPC) is delivered by teams with paediatric expertise. While burdened by the life-limiting condition of their child, parents must also fulfill their roles as main care providers and decision makers. Collaboration between parents and SOPPC teams is important, as the intermittent care and uncertainty it entails often lasts for several months or years. We explored parents’ experiences and their demands of collaboration with SOPPC teams. Methods We conducted nine narrative interviews with 13 parents of children and adolescents with life-limiting conditions and used a grounded theory approach to analyse interview data. Results Parents stressed the importance of paediatric expertise, honesty, psychosocial support, an individualised approach, experience of self-efficacy and the need to be recognised as experts for their children. The narrative interviews showed that collaboration between parents and SOPPC teams was characterised by parents’ need for specialised professional assistance and their simultaneous empowerment by SOPPC teams. Conclusions Parents’ perceptions of what good collaboration with SOPPC teams entails are manifold. To meet these complex needs, SOPPC requires time and specialised expertise.
    Type of Medium: Online Resource
    ISSN: 2045-435X , 2045-4368
    URL: Article
    DOI: 10.1136/bmjspcare-2020-002576
    Language: English
    Publisher: BMJ
    Publication Date: 2022
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