The experience of the spouse caring for a partner with Parkinson's disease

Abstract
The symptoms and progress of Parkinson’s disease are unique to each individual. The purpose of this study was to understand the experience of a spousal caregiver of a partner with Parkinson’s disease. The three aims of this study were to: explore the experience of caring for a partner with Parkinson’s disease, identify areas of support that may be needed, and inform professional health practice about the perceptions of the caregiver spouse. A qualitative descriptive study was undertaken, collecting data from semi-structured interviews with five women over the age of 65 years of age. Inductive thematic analysis was used to analyse the data. The three main themes that emerged from the data were: committed to caring, good support, and limits to caring. Spousal caregivers seldom anticipate finding themselves in this role. Nevertheless, they are committed to doing the very best for their partner. Their journeys were unpredictable and mental stress was a common feature with no easy solution. The women all attested to good support from the Parkinson’s Society, formal health agencies, and health professionals. It was, and is, a difficult time in their lives but they live through the trajectory of their partner’s Parkinson’s disease by deciding to accept it, being flexible and adaptable, and using the services available.

Ngā ariā matua
He rerekē ngā tohu o te mate Parkinson i tēnā tangata, i tēnā tangata. Te whāinga ia o tēnei rangahau he kimi māramatanga mō ngā wheako o tētahi hoa rangatira kua pāngia tōna hoa e te mate Parkinson nei. Ko ngā whāinga e toru o te rangahau nei he tūhura i ngā wheako o ētahi tangata atawhai i ō rātou hoa rangatira kua pāngia e te mate Parkinson, te tautohu i ngā wāhanga e tika ana kia āwhinatia te tangata, me te rapu māramatanga mō ngā whakaaro o te tangata mō te hoarangatira kaitiaki hei whakapakari i ngā mahi tapuhi ngaio. I kawea tētahi tirohanga whakamārama, i kohia ai he raraunga i ngā uiuinga ko tētahi wāhi anake i āta whakatāhuhutia, ki ētahi wāhine tokorima i runga ake i te 65 tau te pakeke. I whakamahia te tātaritanga kaupapa toro-whānui hei tātari i ngā raraunga. Ko ngā kaupapa matua e toru i puta i ngā raraunga, inā: te ngākau-ū ki te atawhai, te tautoko tino pai, me ngā tepenga o te atawhai. He ruarua noa iho ngā hoa rangatira i mōhio tērā pea ka tau tēnei āhua ki runga i a rātou. Ahakoa tērā, kei te ū rātou ki te āta taurima mārire, kia tino pai rawa atu te taurima, i ō rātou hoa. He uaua te matapae i ngā huarahi ka whāia, ā, ko te kōhukihuki ā-hinengaro tētahi āhuatanga ka kitea noatia, he uaua ki te kimi rongoā. E ai ki ngā wāhine katoa he kaha anō te Rōpū Parkinson ki te tautoko, waihoki ngā tari hauora me ngā hunga ngaio o te ao hauora. He wā tino uaua, i mua, ināianei i ō rātou ao, heoi anō, mā te whakaae anō o te ngākau ki te pānga o te mate Parkinson, mā te noho wātea, kakama, i roto i ōna whakamātautau, mā te whakamahi i ngā ratonga e wātea ana, ka puta ka ora.

Keywords / Ngā kupu matua
Parkinson’s disease / Te mate Parkinson; informal carer / te kaitiaki ā-hoa; partner / te hoa rangatira; qualitative research / te rangahau ā-kounga; caregiver burden / te taumahatanga kaitiaki