| Titel : | “I am no longer alone”: Evaluation of the first North American camp for youth living in families with Huntington's disease | | Documenttype: | artikel | | Auteurs: | Kavanaugh, Melinda S., Auteur ; Cho, Chi, Auteur ; Maeda, Hotaka, Auteur ; Swope, Chandler, Auteur | | Uitgegeven: | Amsterdam [Nederland] : Elsevier | | Publicatiedatum: | 2017 | | Tijdschrift: | Children and Youth Services Review Vol. 79 | | Paginering | 325-332 | | Taal : | Engels (eng) | | Trefwoorden: | Gezin:Algemeen
Gezin:Gezag en omgang
Gezondheid en welzijn:Ziekte
Kinderrechten (algemeen):Participatie:Participatie in onderzoek
| | Samenvatting: | In de VS zijn 30 000 mensen getroffen met de ziekte van Huntington waarvan 200 000 een risico op deze ziekte hebben. De ziekte van Huntington kan gezien worden als een ziekte van de hele familie. Jongeren die leven in een gezin waarin de ziekte van Huntington voorkomt, beschrijven dit vaak als iets verborgen, isolerend en dat men slechts weinig ondersteuning krijgt van leeftijdsgenoten of andere volwassenen. Er wordt aan hen slechts weinig de vraag gesteld over wat zij weten over de ziekte, welke impact dat heeft op hun leven en gezondheid terwijl men in contact gebracht wordt met lotgenoten in gelijkaardige situaties. Ook voor ouders is het vaak niet gemakkelijk hoe, wat en wanneer men dit precies te vertellen aan de kinderen. | | Summary: | Affecting over 30,000 people, with approximately 200,000 at risk in the United States, Huntington's disease (HD) is often called a disease of the family (Huntington's Disease Society of America, 2015). HD, with its complicated, stigmatizing symptoms (involuntary movement, slurred speech and cognitive impairment), commonly manifests during ones 30′s and 40′s during which children are often present in the home. Living with a parent or family member with HD can be emotionally charged, particularly given the knowledge of the 50% inheritance rate (Forrest Keenan, Miedzybrodzka, Teijingen, McKee, & Simpson, 2007), manifesting concern about whether they will inherit and when they might test for the disease (Driessnack, Williams, Barnette, Sparbel, & Paulsen, 2012).
Moreover, many children and youth participate, at often-intense levels and complexity, in caregiving for the parent or family member (Kavanaugh, 2014). With inconsistent knowledge of HD and attention paid to HD families by health and social service providers (Helder et al., 2002 ; Lowit and van Tiejlingen, 2005), youth in HD families describe secrecy (Williams et al., 2013), isolation, and little support from peers and other adults (Kavanaugh, Noh, & Studer, 2015). Youth in families with HD are infrequently presented with an opportunity to explore what they know about HD, how it affects them and their well-being, while connecting with “like peers” in similar situations.
In families with illness, youth well-being is often influenced by what they are or are not told about the parent's illness (Muckherjee, Sloper, & Lewin, 2002). While many families struggle with what to tell their children, it is clear children and youth need support in helping them deal with a parental illness (Spath, 2006). Youth in families with HD desire information about the disease process and the possibility they themselves might be at risk – while clearly stating the need to be in supportive environments with other “like youth” where they feel normal and less “othered.” (Kavanaugh et al., 2015). Yet, these youth may be kept in the dark about their risk of inheritance and HD in general, as many parents struggle with how, what, and when to tell them (Forest Keenan, Teijlingen, McKee, & Miedzybrodzka, 2009).
Addressing the gap in youth services and support, the Huntington's Disease Youth Organization (HDYO), an international non-profit for youth in families with HD, developed a series of programs and supports for these isolated and vulnerable youth, including a youth respite camp. | | Link naar een elektronische bron: | http://www.sciencedirect.com/science/article/pii/S0190740917302372 |
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